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 
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. 


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. 


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! 


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 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 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 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: 

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!! 


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!!! 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.....


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 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.


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.... 


'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 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 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. 


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 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! 

Saturday, July 1, 2017

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 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 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'.

Sunday, May 28, 2017

Accident, migraines and misbehaving tendons...

Sometimes all you need is 20 seconds of insane courage;
20 seconds of embarrassing bravery 

Here is a new one for you...

This week I had a car accident...yes you did read that right. I should promptly mention that I am okay and came out way better than my poor car. I should also state that it was not my fault...which after learning I was okay was the second question to come out of my husbands mouth.
Grab a cup of tea and settle in for story time!

The week started off rough with a dreaded and persistent migraine. On Saturday I went into town with Mum (who had to copy my style and buy a matching denim jacket so we could be twins) when I noticed my left eye started to get blurry. Brain: ignore symptom Liv you are just tired. Before long the pain and pressure on one side of my head began followed by that sinking feeling in my stomach I knew what this was! I have never really been a headache person let alone had migraines however for some reasons over the last year or so I have jointed the migraine club. Trust me you do not want membership! Mum has been a seasoned member of the migraine club to the extent that when one struck she would end up in urgent care needing injections. Thankfully (touch wood) Mum hasn't had one for quiet a long time except ironically I seem to have unwillingly inherited them because obviously I don't have enough to deal with. You avoided the dodgy genes again Joe! Anyway, Mum had a little stash of migraine medications in her bag for those just in case moments. I dissolved the wafer on my tongue and went to seek refuge in my dark quiet room. Miraculously after a two hour sleep I woke up and the throbbing sickly pain in my head had disappeared. What heavenly relief! Until Sunday afternoon where the one sided throbbing pain returned. I hunkered down to ride this one out. The pain is indescribable I would often touch my eye to make sure it hadn't exploded due to the pressure I had in my head. I swallowed anti-inflammatories, pain killers and anti-nausea tablets. I drifted in and out (mainly out!) of sleep that night. Monday was spent in bed where the rest of my body became jealous that my head was getting all the attention so it decided to include some pretty gnarly joint pain. Monday called for all my self care skills to be utilized as well as lots of kitty snuggles!

People have service dogs I have a service Cat! 

Tuesday...the day I could have really done without! I woke up and my head did feel better than it had. I was left with intense fatigue and a mildly throbbing head. I just felt off! I knew I had to pull myself together because I had a session to run in the afternoon. This term I am volunteering to run a Seasons for Growth Programme at one of the local Primary Schools. This is an amazing programme for children and teenagers who have experienced significant change and/or loss. I spent all my morning and early afternoon resting and attempting to make myself look human. Driving there I gave myself the usual pep talk. I turn up and the other companion arrives and we sit and wait..and wait and wait and none of the three children show up! The joys of group work! So we plan for next week then pack and up and go our separate ways. Dan was working so I was going to Mum and Dads for dinner.

I usually go the long way to their house but decided to go the short way...bad move Liv! I was driving for less the two minutes when out of no where a van backing out of a drive way backed/slammed into the passenger side of my car. Clearly not seeing me!! To say it gave me a fright was an understatement. My poor body went into instant shock. Somehow (probably due to all my adrenaline pulsing through my body) I kept it together as the driver came over to check I was okay (which I was!) and swap our details. We made sure my car still went which it did and I drove to Mum and Dads again still in shock. I hadn't looked at my car at this stage but once I was safely at Mum and Dads I got out and looked at it and that's when it all hit me. I felt physically sick and of course the tears started as I phoned Mum who before I knew it was home with Dad to comfort me. My parents must dread phone calls from me! What a day I tell you!! I am just so thankful because I know it could have been so much worse. I had some special angels watching out for me that for sure. My poor car looks a bit worse for wear but that is so much better than it being the other way around.

The rest of the week was spent dealing with insurance (who have been fantastic) and taking my car down to the repair shop to get photos taken of the damage. I have made myself keep driving so I don't loose my confidence but its fair to say I have nearly downed a whole bottle of Rescue Remedy this week. I also made an appointment with my doctor and she has prescribed me some migraine medication. I am very happy to put this week behind me!

In other Lupus related news for the last month or so I have been dealing with tendons in my hand that have decided that they don't wont to do their job any more. My hands have always been an ongoing problem for me. When I was about 14 I had the tendons in my right middle finger reconstructed because it was bent at 90 degrees. If you look at my fingers they all bend unusual ways and do not straighten properly. I have what are known as 'swan-neck' and boutonniere deformities and extensor tendon subluxation. Now although I could never be a hand model my hands have still mainly worked which is the main thing. The issue at the moment is my left hand ring and pinky finger extensor tendons are slipping over my knuckle every time I attempt to make a fist. 

It has been doing this for years and I saw a hand surgeon over 10 years ago about it but have put off the surgery because this didn't cause me any pain and was more just annoying. However over the last month I have had significant pain through my pinky and ring finger knuckle and the tendons have started making a pretty loud snapping sound as the pop off my knuckle. I am back in a hand splint to stop this happening but we know this is just keeping me comfortable and not actually fixing the problem. The only way this can be done is through surgery...oh joy! I have an appointment with a hand surgeon in Auckland on the 8th June to see what the next move is. Extra points for him if he knows what Lupus is!!!

I will keep you updated on how that goes. In the meantime I am just going to wrap myself in bubble wrap and attempt to bring you 'boring' life updates for a little while. This life of drama is totally over rated, especially when you have no control over it! 

Thursday, April 6, 2017

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 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!!!