The Backstory on My Back


acc HELPHi, I’m ACC 18 Number 201905123684, I’ve swapped the numbers a little, although it probably doesn’t make any difference. I’m fairly well known.

My back story consists largely of digital files and probably a few manila folders and other storage media in several Accident Compensation Commission, medical, physio, specialist, hospital, surgeon, Occupational Therapist, Pain Specialist offices around New Zealand. They get shuffled from time to time.

Having said that, everyone on my journey has been friendly, thoughtful and most have tried to help me. A few, who I haven’t met, somewhere in the system have the job of helping ACC to not have to pay for my surgery, with considered justification. I’ll talk about that too.

Blackroom Relay for Life 2016 Print-47In March 2018, I hurt my back getting ready to set up for the Auckland Cancer Society’s North Shore Relay for Life event. The annual 18-hour relay, raising funds for cancer services which I have completed 6 times. I started with my family in honor of family members who have died from cancer, including my late father-in-law.

Then I got cancer myself, and during the fund-raising process I’m proud to say that over 30 men got tested for Prostate cancer because of my story, but I’m getting ahead of myself. I was given the honour of speaking at the opening, having refreshments in the survivors’ tent and carrying one of the flags in the first survivors’ lap. A humbling and emotional experience.

20170325_155154Trying, unsuccessfully, to awkwardly pick up a bag of tent poles out of a trailer provided at the venue by the organizers, for a 4 room tent, would set off a chain of events that has opened my eyes to the plight of many New Zealanders, who desperately want to work, but can’t, because the health system is underfunded, under resourced and inefficient.I became one of them.

I have a job. I hold a management role at the NZTA, a job I love with an awesome team of people who provide mostly Real Time Travel Information to motorists and travelers around the country.

It’s been 14 months since my injury.

My Occupational Therapist, GP, Pain Specialist and my Manager have agreed that I can work 2 three-hour days a week. ACC funds taxis to get me there as I could be a danger to myself and others, under the daily pain medication regime I’m on. That allows me to do something productive as well as socialize with my colleagues and not feel totally divorced from my work.

It was part of my back to work program, which has stalled since the Orthopedic Surgeon advised me that we had ‘painted our backs into a corner, having tried every alternative to fusion and discectomy surgery.’

I am incredibly grateful that the NZTA hasn’t dropped me under the bus and that I still have a job, although I am not currently able to perform my normal duties.

Over the next while, along with other activities, I’m going to talk about my life, one shared with my family and friends, colleagues and the health system.

I’m going to talk about what happened, about why I still can’t go back to work, why I am still waiting for surgery after 14 months. How ACC don’t want to pay for the surgery, how I can’t afford to pay for the excess if I went private, and my current experience with the Auckland District Health Board and North Shore Hospital, where I was referred as an Urgent Patient on the 9th of April.

I have not yet been able to connect with the person who makes appointments. When I rang them at the end of April, the hospital representative at the Patient Service Centre said they must see me within 4 months, and it was too early to ring. I was told it wasn’t worth ringing before the end of May and even then, not to get my hopes up. I rang today and left a message on their voicemail.

I have Prostate Cancer.

Mercy ScannerDuring the dark days of 8 weeks of radiation treatment, followed by chemicals, I think I had less than a week off work, on the odd day when I was so fatigued that I couldn’t function.

I arranged my radiation sessions to be around 7AM every morning so that I could go straight on to work afterwards, and still be on time. That’s how I roll.

I am now fortunately in remission, and my latest blood test last week showed a good result. The irony is that Cancer is fatal and there is every possibility that one day, hopefully decades away, it will kill me.

On the other hand, chances are very good that after back surgery, I will be a little sore from time to time, manageable with over the counter pain relief. Yet, for cancer I had less than a week off work and with a back injury it has now been over a year!

Mine is a common story, but one with which for the first 40 years of my working life I had no personal experience. I’d heard stories, mostly about people who allegedly don’t want to work, and enjoy living off the taxpayer’s dollar, but there are so many more people like me, who desperately want to work and contribute to society. If you have a look at my profile on LinkedIn you will read that my goal in life has always been to help people.

I consider my work important, a contribution to reducing the pain of traveling on our ever more congested road network by offering information about planned and unplanned events, about expected delays, alternative routes, alternate modes of transport, helping people plan for holiday road trips and much more.

I lead a team of awesome people who really care about you, their customers. It matters to me, but I’m being kept from it.

It’s funny, we talk about the cost to society of people who are needlessly killed on our roads. The cost takes into consideration the contribution they will make to the country’s GDP over their lives. Yet, the cost to taxpayers to get me back to work by providing me with back surgery, is far less than the cost of keeping me away from work.

As I said, mine is a common story, but it’s not one that people like you and I can easily relate to, unless we are directly affected.

Of course, in each instance, it’s not just the patient, it’s our partners, our family, our friends, our colleagues and of course the workload that must be done by someone else, or perhaps not at all.

seatI’ll try to make the story interesting, maybe even have the odd laugh. But let me tell you, this is no joke. I have gone from being super positive and highly motivated, with a bucket list of things I want to do which I prepared when I found out I have cancer, to being virtually trapped in my home, on the border of depression, not being able to stand, sit or lie down for any length of time without significant pain.

I’ll share an email I sent to ACC after having read a report prepared for them by a specialist, who said that “The patient appears to be doing reasonably well”.

Interestingly, this person who was paid by ACC to investigate my case did not once speak to myself, my GP, my Orthopedic Specialist, my Case Manager, my Pain Manager or my Physio.

I guess ‘reasonably well’ is a relative expression. I’m not dying.

The email is quite personal, but that’s really the point. I am a person.

Anyway, that’s it for now. I’m hoping to hear back from the hospital today and am getting on with other things in the meantime.

You may find my story interesting; you may be in a similar situation yourself. I know I’m not alone. I understand it was stated in Parliament Question Time last week that the number of elective surgeries completed last year was 10,000 ‘elective’ surgeries less than the year before. Reasons included strikes and funding. It’s little wonder it could take months for me to just be able to speak to someone.

Feel free to comment or ask questions. I know I’m not alone here and you may be in a similar situation to mine. I grew up as a fan of New Zealand’s welfare state. I learned that we are the system and that if we don’t stand up for something, no one else will either. I just didn’t know how bad it was.

So, you there. Have you had any experiences like mine? How do you get some action without ruffling people’s feathers and having your manila folder dropped down the list a little? Of course, that wouldn’t happen would it?

I welcome your comments.

 

 

 

 

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Floating to Relieve Back Pain and Stress



Float TankI didn’t want to have Mental Health Week pass without posting something and this is going to become a short series on the benefits of floating in a sensory deprivation tank and my experiences with it. So ignore the next few blogs if you don’t have aches and pains or don’t suffer from stress.

I have been ‘floating’ for years and it amazes me that most people still don’t know it exists or what it does. I started a bit of a journal back in the 90’s about some of my float experiences and have always thought I would share it one day.

I’ve been off work for about 6 months due to a serious back injury and I have been taking a cornucopia of painkillers which means that I can’t drive and I’m often dopy and unable to concentrate for long. I’m doing physio and seeing a back specialist and trying my best to avoid surgery. Anyway, enough of that.

I’ve been going to a place called Float Culture where I lie in a tank like the one in this picture, which contains a solution of Epsom Salts (I think) and water at body temperature. You have a shower, climb in, float, turn off the light and relax for an hour. Typically there is music for the first few minutes while you relax and again at the end so you know your time is up. Sometimes I go into a meditative state and sometimes I fall asleep, and no you can’t roll over and drown.

Lately I have been combining it with massage and for a few hours I have been able to go from pain of around 7 out of 10 to almost nothing. Unfortunately it comes back after a while when gravity takes hold, but during that time it at the very least helps reduce inflammation and you feel like there is no gravity. Gravity is my enemy right now. Imagine having a great massage when your body is already relaxed.

The masseuse, Kim, probably doesn’t realise how much pain I am normally in, but combining her work (careful around the injury) and the float leaves me feeling so free of pain that is difficult to explain to someone who hasn’t been in chronic pain for a long time. Chronic pain and not knowing when it is going to end is extremely stressful, as is not being at work. If you have ever felt work was drudgery or you didn’t want to go, the feeling I have might be a bit foreign to you. I love my job and can’t wait to get back, but I don’t know exactly when I’ll be capable.

Another element of floating is that without any sensory input, not being able to feel where the water starts and ends, is that it is very easy to get into a trance-like state, effectively meditation. The difference is that you don’t need to know how to meditate. I often see people after they come out of their float room and they are radiating endorphins, your bodies natural opiates and often talk about having almost mystical experiences.

I have floated for lots of different reasons over the years, for relaxation, for creativity, to catch up on sleep, to alleviate jet lag (before or after a long haul trip) and, like now, when I have an injury. Whilst the pain came back, I slept all night (about half of the time I’m up for an hour around 2-3AM because of the pain) and my digestive system felt better. I also lost almost a kilo of weight over the 24 hours which is effectively a litre, even though I drank a lot. I didn’t realise I was carrying so much fluid! That helps too because a side effect of the drugs I am on is that you put on weight and more weight and a bad back is not a good mix.

On their site, Float Culture, one of the more recent additions to the floating experience in Auckland has a blog page where people share some of their experiences. I’m going to share a few experiences of my own. So if that interests you, you will find them by following this blog.

If you know anyone who is not claustrophobic and can do with a bit of inner or outer healing, or just an amazing relaxation opportunity, tell them to try it out and let them know you learned about it from me, or if you have had an experience, feel free to leave a comment. If you are not in Auckland, float tanks can be found in most cities around the world, just Google it.

They are popular with elite athletes, creatives, people with cancer and yet most people, including the health industry don’t even know they exist.

So if you’re interested in learning more of my experiences, follow this blog. If not, remember it for a friend.

 

 

GPS Tracking and Navigation for Elderly People


The other day I read about a new invention, which is a GPS enabled walker for elderly patients. Apparently this is a student research product and being tested in Nursing Centres. It uses Wi-Fi communication and helps guide people around a complex such as a hospital or retirement centre. My first reaction was that this was a joke, but the more I think about this navigation for zimmer frames, the more it makes me think about solutions we will see soon.

Firstly, people do get lost in hospitals and large complexes, and the people most likely to lose their way will be elderly patients, perhaps with dementia or simply struggling with stress, pain or under influence of medication that makes them a little dopey and disoriented. If they are in a wheelchair or using some other aid, a mapping or navigation device could well be useful. Hospitals will in future have WiFi networks for their and this could be a device that is supported by it.

I often hear stories about elderly people with dementia getting lost when they go for walks and understand this is quite common. If they remember that they do live in a village or rest home and have a navigation device, it could guide them safely back home.

The other side is far more likely in the near future and that is tracking of people. I had a discussion today with someone from a New Zealand hospital about tracking of staff who visit mental health patients in their homes and the value of being able to locate them if they haven’t checked in within a pre-aranged time. Small pocket GPS tracking devices with GPRS connectivity already exist commercially and some of them also have ‘panic buttons’ that send an urgent alert together with the current GPS co-ordinates. These are typically still quite expensive, i.e. over $500 but with volume the prices will come down.

St Johns and other organisations have solutions such as LifeLink which is a great solution for in and around the home, but what happens when people go further from home. Wouldn’t it be great if there was a solution that would allow you to locate your elderly or ill relative if they don’t return from shopping or a quiet walk. What if they just want to walk a few houses down the road to visit a friend? I would have gladly paid a rental for a service like that for my late grandmother who had a fall one evening and wasn’t found until the following day with a broken hip.

Although it’s not aimed at  elderly people, you will soon find walking directions on portable navigation devices (PND’s). You will be able to download a map that tells you where to park your car and then how to find your way around shopping malls, hospitals and unversity campuses, through parks and arcades. Maps of this nature will be commerically available within the next 12 months. They will also be available on map web sites in the very near future.

Most countries will also very soon have sophisticated navigation software and maps available to run on mobile phones, which will be as impressive as the portable Navigation Devices that are so popular today. Many phones have GPS built in and Bluetooth GPS Receivers abound for much less than $50.

It’s not a big stretch to see software being added that allow your location to be sent to other people on demand (with your permission of course). This isn’t Sci-Fi I’m talking about, it’s 2008 technology.

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)