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!!! 

The unwelcome guest

'Because sometimes that's what has to be done. 

You have to lay down with it. The hurt. Or the heartache or even the hate.

 Whatever is inside. Sometimes you have to get close to it. 

Taste it and understand it so you can define it, before it defines you.' 

JmStorm

I sense you, 

I feel you,

I know that you are constantly there. 

I am the antelope, you are the lion...hunting..stalking...preying.

Some days you are in the shadows waiting for your opportunity to strike.

Some days you seep into my joints and bones causing agonizing pain.

Some days you zap all my precious energy leaving me struggling to function.

Some days you leave me shaky, feverish and nauseous. 

Some days you decide to cause havoc with my heart rate.

Some days you engulf and swallow up my whole being. 

You are always there.

Waiting,,,, 

Waiting to attack, pouch and suffocate. 

Taunting me. 

My unwanted companion at 4am when I cant sleep due to severe pain.

My unwanted companion that takes away opportunities, choices, freedoms and my independence. 

My every move is calculated because of you.

Will walking too far upset you?

Will staying up an hour later offend you?

Will socialising cause you to become aggravated?

You make me question my every move filling me with anxiety.

Will I upset the balance?

Is it my fault?

Quite frankly you are powerful, controlling and terrifying all at the same time. 

For some reason though our paths have been aligned and as unwelcome as you are 

I know you are there.

I acknowledge you and respect your power because the reality is in a mixed up kind of way you think you are protecting me. 

You think you are helping me.

Do you know what though..truth be told I think you are confused.

Confused what your role is, what your job is. 

My body is not the enemy, I am not the enemy.

I am not your prey!

I promise you I can protect myself.

I do not need your constant suffocating grip.

I can do this without you. 

I can be whole without you.

I can be enough without you.

I can be ME without you.

I can survive without you if you just gave me the chance!

The INEVITABLE

"You will not always be strong, but you can always be brave." Beau Taplin 

I think we all knew deep down that it was only a matter of time. Only a matter of time before the harsh reality of living with lupus caught up with me. We knew I would crash after the wedding but I can tell you we were not prepared for this next chapter. Our vows in sickness were soon put to the ultimate test... 

I cannot be thankful enough that my lupus went quiet and for once and played the game. Best wedding present ever!! Thank you Lupus!  I'm not actually sure if you purposely went quiet or I outsmarted you with a high dose of steroids but anyway I'll take the win.

I walked down the aisle and married the man of my dreams. I wore heals, I danced and I truly was pain free. But trust me Lupus you wouldn't have ruined my day even if you did want to be there. 

Again we left you behind in New Zealand as we headed to Rarotonga for our honey moon. Five blissful nights in island paradise!! It was the most beautiful and the perfect start to married life. We were on top of the world! 

Lupus, you tracked me down towards the last few days but thanks to painkillers, an understanding husband and a few too many rums I kept you at a distance. I could feel you starting to creep back in. I was not ready! In my head I begged with you to wait let me have one more pain free day to just be free to live. My ankles began to ache, my bones throbbed and I began to need to sleep during the day...in the pit of my stomach I knew this was not a good sign. 

We knew you were coming and it was only a matter of time before you made your unwelcome appearance (yet again).  You took the sneaky opportunity of making your grand entrance once I began to taper down on my prednisone. Or was it once I stopped to finally relax back at home and settle into married life?...we will never know. 

I wasn't ready to have you back and as much as I fought it ultimately you did fight harder, you've always been good at that. You wear me down bit by bit. You take away my freedoms and the ability to make choices. I go into survival mode and you go into destruction mode and destruct me you did! You broke me! Days of uncontrollable pain took their toll on my body, mind and soul. It felt like I was being punished for all those days of being pain free. Like you were making up for lost time and now I was just your host. 

I finally broke on the 5th April (just fifteen days after returning home from our honeymoon) after a night of terrifying unrelenting pain that induced vomiting. I had nothing left! I remember ringing my poor mum in tears telling her I couldn't take it any more I simply could not do it. I needed help.  I was taken to my doctors office and by this stage dad had to push me in a wheel chair. I was one sick girl!! I no longer felt like me.  My doctor took one look at me and before I knew it I was in the Emergency Room then being admitted to hospital for pain relief and to be monitored. 

I cannot imagine how frightening it must have been for my parents and Dan. I remember mum physically having to hold me up to walk to the bathroom and being wheeled just down the hall for a chest X-ray because the pain was to unbearable and I was to weak to stand. 

Lupus you truly out did yourself I will give you that. Usually I would do everything in my power to be discharged and recover back home in my own bed but for the first time in my life when the doctor said he didn't feel comfortable sending me home I didn't try and bargain with him or plead to go home. I knew I was where I needed to be! 

Relief did come to me in the form of iv morphine though out the night. All I could do was lie there with my eyes closed and rest my weary body. I didn't fight you that night I didn't have anything left. I just let the morphine take effect and drift away. I had the most wonderful nurses who kept my pain under control through the night and would heat up heat packs to soothe my joints. 

The next morning my iv morphine was switched to tablet form and with the pain being under better control I was discharged in the afternoon. The next weeks were a haze of morphine induced sleepiness and a body still not able to function but I was thankful to at least be able to control these symptoms from the comfort of my own home. 

Oh how I look back now and wish that was all I was going to face....how badly I want to type and they lived happily ever after without Lupus THE END....but the next chapter was just beginning and all we could do was cling to each other and keep searching for our little pockets of joy!! 

Welcome to married life chronic illness edition!!! 

Pain in my hip!

"You've got what it takes but it will take everything you've got"

Pain...a simple four letter word, easy to say, easy to spell and that's about where my list of positive things end about the word. If you type the word 'Pain" into Google it revels 814,000,000 results in 0.18 seconds. People all around the world are searching for answers to explain their pain but most importantly answers on how to escape it and make it go away. I think we all fear pain on some level- it's uncomfortable, frightening, foreign for most people and makes us lose control. The good news is most pain is acute meaning that it will hurt and be painful but it will pass. Chronic pain on the other hand has settled in, made itself at home and for the foreseeable future isn't budging from your body.

Intense, exhausting, miserable, cruel, nauseating, burning, suffocating, distressing, excruciating pain!

These are the words I would use to explain my left hip which has been an on going issue for a year and a half. It's the kind of pain every cell in your body screams out to. Every part of you desperately wants to escape from. It's a pain that has become way too familiar and frequent for my liking.

Things took a bad turn in March 2013 when after a lupus flare my pain became localised in my left hip. It was as if all the pain in my body suddenly went to this one area. I've lived with pain but never experienced pain this severe before in a joint. My rheumatologist sent me for an MRI to rule out Avascular Necrosis . A clear MRI came back leaving us with no answers. Which brings with it the self doubt - is this pain all in my head? There's nothing on the scan it must be fine? Why did nothing show?? My orthopedic surgeon decided to try an intraarticular cortisone injection which involves using an xray machine to guide the injection into the hip joint. There were two reasons to try this method: firstly to gain pain relief but also to see if the hip joint was the cause of my pain and not another area like my back. Once the local anesthetic was injected into my joint I gained IMMEDIATE relief which was heavenly. Thankfully my steroid injection worked perfectly as well and I thought my days of being in agonising hip pain were over. They were for about six months... Slowly but surely the pain returned and so did the crutches and the loss of ability to do the things I used to be able to do. Codeine turned into Tramadol which then turned into Morphine as I tried desperately to get this pain under control.

In February this year it was decided another steroid injection was needed. Again everything went well. I got instant relief from the local anesthetic and after a few days the cortisone started to kick in. By April the pain had returned! Like before I had started rebuilding my life and gaining independence again then it was all ripped away. That's where those silent tears at night come in. Please make it go again, please make it stop, I'm so tired of fighting this pain, please just leave me alone.

Lovely big needle in my hip during my second cortisone injection

Currently my medical teams are at a loss of what to do to treat me. My MRI's aren't showing anything conclusive. My scan is clear but my ability to function and live like a twenty three year old are completely irregular. I am getting by on a large dose of morphine mixed with stubbornness and perseverance. I refuse to let this be my long term future. Yesterday I got in a warm therapy pool and was able to walk freely which was the most heavenly experience. Water has always been a source of comfort and freedom for me. My heart ached when I had to get out and reach for my crutches and instantly the pain returned as weight was put through my hip. I wish I had fins! I wish I was a mermaid!

So now when my pain gets excruciating and I feel like I am going to be stuck like this forever I close my eyes and imagine myself walking pain free in the pool and think one day I will do this on land and I will cherish every beautiful step.