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 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'.


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 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!!! 

Thursday, March 30, 2017

Recuperating Phase


" Maybe it's not supposed to be easy for you.
Maybe you're one of the rare few who can handle tough times and still be a loving person.
Maybe it's going how it's going because you're built for it...
Don't stress a thing.
It's going to work out because you're not going to stop putting the work in."

Rob Hill Sr 


Here I am again…It is currently a ridiculous hour of the morning and instead of continuing to toss and turn in bed while being extremely mindful that Dan has to get up at 5am, I have surrendered out to the lounge to find solace in pouring my meandering thoughts from my brain onto my intensely bright laptop screen. For a welcome change I currently can’t sleep thanks to being ‘normal’ person sick; the common cold has made itself welcome in my stupidly immune suppressed body. During the day I start to congratulate my body on fighting off the cold but by night time I find myself praying that my blocked sinuses, throbbing ear, scratchy throat and wheezy chest are not the beginning of dreaded infections. Can you tell by now being chronically unwell results in you becoming chronically paranoid? It becomes one big confusing mess of which symptoms can I ignore or which do warrant my attention and even after 23 years I still don’t have it worked out yet.

Life since I last blogged life has been…ummm…I have sat here trying to find the right phrase to describe it for about 5 minutes and all that comes to mind is a bit shit all over the place let’s say. Circumstances have changed quite suddenly and it’s been bittersweet in many ways. About two weeks ago I was told that contracts at work have changed resulting in my hours needing to be transferred to another social worker. I knew my job would come to an end sooner rather than later but I guess I was just not quite expecting it to be that soon. Yes I cried as my manager broke the news to me, I quietly blubbered as I packed up my desk and before I knew it I was at Mum’s work embraced in her arms because even when you are 26 when things go wrong nothing beats your mum’s arms wrapped around you. I was truly gutted because I LOVED my job there. The saving grace for me looking back now is that I could walk out of there with my head held high. I know I gave that job my absolute all. I take comfort in knowing that I have no doubt in my mind that I should have tried harder because I know perhaps my downfall was I pushed my own boundaries too hard at times…Que the time I was in so much pain after meeting with a client I threw up but then soldiered on visiting another client resulting in gracefully (hopefully) cutting the visit short so I could rush back and be sick again…I am so glamourous I know!
My work place had been nothing but supportive and nurturing in regards to my health challenges. I was blessed to work with such gracious individuals which trust me is harder to find than you think. While I was a student on placement I well and truly learnt this lesson. At a certain agency I was the ‘sick’ person; the one who was unpredictable and at times unreliable, who wasn’t quite as fast as her peers and who always seemed to need time off work for doctors’ appointments. I wasn’t seen as an individual who was capable, who was mature beyond her years, who had immense empathy for her clients and who was always willing to learn. However at my work place I was well and truly ‘seen’ as that person! Sure my health got in the way and did interfere with my ability to do my job BUT those other qualities shone brighter.
I think I have now officially broken the news to those close to me…the awkward conversations of loved ones asking me  how my job was going with me explaining what has happened which was usually met with ‘oh you loved that job’…yes, yes I did. I must confess I went to a BBQ last week and had in-depth conversations with people about my ‘job’ because I am not quite that ready to pull out the ‘unemployed’ card just yet.
I must say that over the last two weeks my health has steadily begun to improve (yay!). This has left me thinking about how productive I could have been at work but then remembering that I have been able to sleep in and have been doing nothing but caring and listening to my body which is why I probably feel a bit better. I have had time and space to let my body rest instead of this crazy pattern of push then crash, then push then crash. Maybe this was God’s not so subtle way of saying ‘liv you need to focus on regaining your health again’. I think he was trying to give me hints all along (que a hospital admission) however I was too stubborn to take notice. As much as I don’t want to ‘focus’ on my health because at times it just feels like a whiny, needy, brat I think that in order for me to get stronger, gain stability and take back control I NEED to.  I still have plans, I have dreams of my ideal job and if anything this has made me more motivated to start putting into action these plans. For now I take comfort in knowing that I don’t have to continually focus on pushing myself and for the first time in a while I can solely focus on getting myself back to my baseline and even above that!

 My motto currently is RECOVER, REST and REPEAT.  

Thursday, March 9, 2017

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!








Thursday, January 19, 2017

Recovery and Healing


" Healing comes in waves and maybe today the wave hits the rocks,
and that's okay,
that's okay, darling
you are still healing
you are still healing."

- Ijeoma Umebinyuo, be gentle with yourself  


The 'acute unwell phase' of this infection is beginning to dissipate ... I am so thankful for that!
Unfortunately the next phase of recovery proves to be just as challenging. 
I wish that as I walked out of those hospital doors I would return back to my base line however I know that is not the case. I have a long way to go to get to where I was and that is daunting to say the least. 

I decided to keep a journal of my recovery so far; its raw and its real in places but hey it is my reality at the moment. I want this space and this blog to remain authentic and honour my journey so here we go....

Wednesday 11th January 

I was so thankful to be allowed out on leave today only having to return at 8 pm for my IV antibiotics. There was a sense of feeling like I have survived the 'worst part' mixed with a feeling of dread as I still have a huge mountain to climb. I still feel like I am in survival mode; I feel numb emotionally at the moment. My body is my main priority there is no room for emotions.

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.  

Before I left hospital my IV line was changed as it has begun to not flush properly and was getting sore. I was let out mid afternoon and went back to Mum and Dads. That evening we were having dinner with my family from Perth before they flew home in the morning. All I could think of was how lucky I was to be there to spend that precious time with them. After some sad goodbyes I was taken back to the ward for my IV's. The antibiotics run for about 30 minutes followed by a 10 minute flush. I then have to wait 30 minutes and have a blood test as this is a really strong antibiotic. The doctors need to constantly monitor my kidneys to ensure they are giving me the right dose and that we are not harming them in the process. I leave feeling exhausted but also relieved to be heading home to my own bed. 

Finally I have to say goodbye to Mum and Dad as they are reluctantly heading away for a week. I am glad that we have convinced them to go because we all know they desperately need the break. I get to go and stay with my wonderful Nanna who is going to keep a close eye on me.
I just can't wait crawl into bed now!! 


Thursday 12th January 

It was so nice to sleep in my own bed with Dan next to me last night. It is always the small simple things that you miss. I slept pretty well till about 5am again when I was woken up with a really sore, unhappy tummy thanks to the IV antibiotics (was told to expect that!). I drifted in and out of sleep but was conscious that I had to be up at 7am to go for yet another blood test to check my kidneys.

Lying in a hospital bed gives you a false sense of 'wellness' because as I got up and attempted to get myself ready I realised how terrible I still felt. I was weak, shaky and clamy and that was all from trying to put some clothes on. I gave myself a little pep talk 'one blood test Liv you can do that!'  
I got myself to the lab probably resembling a character from The Walking Dead. My blood was taken and I immediately went back home to bed. 

Dan left for work and I somehow managed a shower which then put me back in bed feeling absolutely exhausted. Getting changed was hard; forcing myself to eat was hard and I was already feeling anxious about being home by myself so it was time to go to Nanna's. I was greeted by a warm comforting hug and knew exactly that's where I needed to be to begin to heal. 

The afternoon consisted of more sleep and a lovely visit from Sue. It was nice to be updated on the outside world and to forget about feeling horrible for an hour or so. Nanna of course managed to get my first proper meal into me for a few days and then before we knew it it was time to return to the ward. Again everything went smoothly and in just over an hour we were heading home.
By now I am physically and emotionally exhausted! 

Friday 13th January 

It has been another early start as we have to up at the hospital by 8am so that doctors can see me on their ward rounds. I have no energy to shower so just put on my clothes, half fall asleep into my rice bubbles, and collapse into the car to be driven back to the hospital. I get the all clear to be discharged after my last IV antibiotic tonight! Infection wise I am doing good my kidney doesn't hurt anymore and that sick feeling is disappearing. We just know that I have a long way to go to build my strength back up. This is a nasty infection even for a healthy body to fight so of course with everything else thrown in the mix its going to take me a lot longer. 

Together with my rheumatologist we make the call to stop Methotrexate for a number of reasons but mainly because I have seen no improvement in my health. At this stage the risks out weigh the benefits. I'm not prepared to put something into my body that is doing more harm than good. We also put the pieces together of this nasty infection and being immune suppressed from the Methotrexate which is another reason I have decided to stop it. So now I stop and just pray my body is okay without it! 

I get the good news that my kidney ultrasound was clear and everything looks fine there. I am given a script for 5 days worth of oral antibiotics and an anti nausea medication then free to go. We work out that this marks my 5th antibiotic I've now been prescribed in order to try and kick this infection! 

By now everything is beginning to catch up with me and I struggle to even keep my eyes open. I spent more of today asleep than awake. I know what it's like to feel fatigued but this is a whole new level! I am so grateful that I can just rest and sleep and Nanna so gracefully tends to my every need. Cooking me dinner, washing our clothes, wrapping me in blankets on the couch, checking I have had all my medication etc. I feel so safe and comfortable in her presence. 
I am exactly where I need to be. 

Understandably I have been worried about my job as I have missed a lot of time due to my health but I get a reassuring text that my 12 hours a week are safe and that I am to take all of next week off to recover. Again something else to be extremely thankful for.  

Before long it is time to head up for my final IV! By now we know the process so well. Again time goes quickly and before we know it I am complete. It is the best feeling getting my discharge papers and my cannula taken out. My lovely nurse gives us both a hug and wishes me all the best. 

I head home for a shower to wash away the hospital get into my pjs and Nanna cuts of my hospital band in celebration! It is time to close that chapter! 

Saturday 14th January 

Today the next phase begins...recovery and healing both physically and mentally. I feel like I am in that weird stage of not being acutely unwell but not yet feeling like myself. I think that's what is throwing me today I don't feel like myself. I feel like a shadow of myself. Somewhere tucked under the bone crushing fatigue I am there trying to claw my way back. Emphasis on the word trying!!
Today my brain is processing the week. It's finally sinking in. I think that now I am physically out of danger it is now my minds turn to process what has happened. Today when I close my eyes I am taken back to that ED room. I can vividly remember the pain and the look of distress on Dan and Dad's faces. I can hear my pleads to make the pain stop. I see myself whimpering on the bed. I feel the blood pressure cuff on my arm and my blood being taken. 

Trauma, pain, distress and fear! 
Today it is all hitting me. 

The bruises on my arms from blown veins serve as a constant reminder of the pain I've endured. I can't escape. I open my eyes I see the bruises and my body that struggles to function. I close my eyes and I am taken back to the hospital. 

Today it feels suffocating! 

Today I spent most of the day in my pjs on the couch and in bed. I managed to shower around 3pm only being able to stand for a little while before surrendering to the fatigue and sitting down on the shower floor letting the warm water wash over my achy body. 

I knew this day would come. It always does and it will probably feel like this for a little while. I know it's part of the process and that things will get better but right now I feel consumed. 

Today I am over it! I just a want to feel like me again! I miss myself! I miss Livvy. 


Sunday 15th and Monday 16th January

These two days just merged into one; one big haze of sleep and sleep and more sleep. 
There's nothing much to write. I wake up; get some breakfast into me; sit on the couch for a little while; surrender to the fatigue and go back to bed; get back up for lunch; go back to sleep; manage a shower; more sleep; dinner; another rest then sleep. 

I cannot believe how bone crushing this fatigue is. It is taking everything out of me. Simple once easy tasks now feel near impossible. I've only left the house to go for my trips back to the hospital. 
This fight is so hard! I told Dan I just feel like I've got nothing left..I have been fighting so hard that there is nothing left. He wraps me in his arms and tells me he won't let me fall, that he's got me and we are going to get through this. 

My beautiful friend has some words of wisdom when she told me that maybe the best thing for me to do right now is not to fight. To let things be, and that when we let go our bodies and minds know what to do. My reply was that I am so programmed to fighting that I think my problem is that I don't know how to let go. Honestly I think I'm scared to let go and trust my body. I'm afraid of how frail and weary my body is and how mentally exhausted I am too. I just don't have any room to slip. Right now I just don't feel safe inside of my body. 

This was her reply:

Letting go is not slipping darling xox it's not giving in or giving up. 
It's accepting we can't control some things and trusting the process of healing and trusting in something bigger than ourselves. I can only imagine how exhausted you are both mentally and physically and that's why I think you need to let go; to let go of putting any pressure on yourself to be positive and any other things that are weighing you down and just be. Just float. Because all this fighting is perhaps doing the opposite of what u want it to just now. And you WILL come out the other side. You will I have no doubt of that xoxox 

Even though I am struggling so much inside this body of mine I take huge comfort and peace knowing I am surrounded by indescribable amounts of love and support. Right now I take shelter in their loving arms and with their kind words. I can heal through their love. 

Thursday 19th January

On Tuesday Dan and I came back to our place. Dan had the next two days off work so was able to be home with me. We cannot thank Nanna enough for her gentle nurturing care over the last 5 nights. She is our wonder woman and we will forever be grateful for everything she did for us. 

Being home in our own environment is another step in the right direction. It is another hurdle still learning what my limits are. At home there is more to do and while I was home today and the dishes built up they began to annoy me. Dan had cleaned the kitchen and put the dishwasher on before work and I didn't want him to come home to a mess. This was easier said than done. Unloading the dishwasher took three trips to the couch to recover in between plates, cups and utensils. Another half an hour then I began to stack the dishwasher. This then left me shaky and dizzy so I surrendered to the couch. Half of me feeling accomplished the other half feeling frustrated! 

Yesterday I drove Dan to the supermarket so he could run in and do a big shop for us. Even driving to the supermarket was enough to completely wear me out. I had to have a sneaky sleep in the car while Dan went shopping then spent the afternoon in bed trying to recover. 

I am no where near where I want to be but I have had one word replaying over and over in my head today...patience! I must be patient and trust in the timing of my healing. Yes, I get frustrated and angry heck I cried in the shower this morning because I am so over feeling miserable but I am letting myself feel these feeling instead of resisting and blocking them. 

I get texts saying 'you'll be better soon' 'you'll be okay' and I know I will be; I always feel better and I will be okay but right in this moment I don't feel okay, and maybe that is okay as well. My body and mind have been through a lot. It hasn't just been this infection I don't think I even got a chance to recover from my hip procedure and all the pain I endured prior to that. There has been no break or respite for me in a very long time. 

My healing now lies within ensuring my mind has the space to process everything. My body is still recovering. Physically and mentally my energy levels have reached an all time low but perhaps there is healing in that as well. 

I need to learn to be okay again. I need to learn to trust again. I need to learn to live again. 

Here's hoping it won't be long until I have a much happier ,positive update but until then I will be sleeping, resting and healing my body, mind and soul. 

One moment and one breath at a time.