Surgery to fix pesky finger tendons

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

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

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

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

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

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

Today I am seventeen days post surgery. 

Seventeen days filled with an array of emotions and new leanings perhaps my biggest being able to put my bra on with one hand!!

Seventeen days of time feeling like its going by so slowly to the realisation that I am now able to achieve more than a shower in my days. 

Seventeen days of swallowing pain medication or being told off for trying to be brave and not to take them. 

Seventeen days of anticipation, relief, pain, nervousness, frustration, tears, comfort, laughter, joy and love so much love! 

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

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

20th October 2017 - Surgery day 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My breakfast is brought in and this is when I learn my first lesson...The health care assistant places my breakfast in front of me and asks if I would like her to butter my toast without even thinking the words 'oh I can do it thank you' come out of my mouth I then glance down at my hand look at her and laugh and change my answer to 'thank you I will need some help'. 

Yep...asking for and accepting help does not come naturally for me.  

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

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

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

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

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

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

How are you? Overwhelmed!

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

Here is an insight into my thought process that night:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

"Your story isn't calm. 

The road has been chaotic at times, 

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

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

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

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

But that my friend,is what makes you fascinating.

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

 Something wild

. Something courageous.

 Something true. 

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

Those quiet depths of you."

- Victoria Erickson

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