The Tangled Web of Chronic Illness

Recently I described a less than optimal week which had included a fancy nuclear med stress test of my heart. This week, which is not yet over, has been another WTF? week in the life of this chronic illness patient. I’m sharing for several reasons:

  • For friends, family & co-workers of other chronic illness patients, to show “what happens”, enhance understanding
  • To highlight the complexity involved and why GPs are so important in our health management (wary of the NSW pharmacist prescribing proposal in cases like mine)
  • To illustrate the October and November episodes may well be related to each other – and to a tooth
  • Dental care needs to be included in Medicare

This article assumes the reader is not new to my writing – if you are, click on the included links for the backstory. One piece of information that may be missing from linked articles is back in May/June of this year I had a fever for six weeks. Continuously. No idea why at the time. Bloods, CT scans, nothing indicated why I had a temperature. Did the merry-go-round of my treating specialists: GP -> gastroenterologist -> rheumatologist -> endocrinologist. Then out of the blue I got a very sore tooth. Dentist prescribed antibiotics, temperature disappeared. I don’t know about you, but I suspect I had a painless tooth infection for six weeks. Just tuck this paragraph in your memory banks for later in today’s story.

So we roll forward to November 10. I had a painful tooth – different tooth this time. I also had flaring hands from the psoriatic arthritis. Skin was flaring on the left arm. I stopped wearing my partial plate as it “clicks” onto the painful tooth, I hit the Osteo Panadol. November 11 (Friday) I woke to the flare worsening. I needed pain relief. I took Osteo Panadol, Tramadol and Prednisolone (as per previously established protocols). I also took my temperature. Low grade, 37.4 (but given at my age my normal temperature is about 36.6, it was a little higher than I’d like). Me being me, I thought if this is no better tomorrow, I’ll call my GP. Good plan, right? Not all plans go according to plan.

Late in the day, I developed a rather nasty pain under my left scapula. I pulled out the foam roller, that’ll fix it! No, that didn’t work. Spikey ball? Minor relief. Massage ball? Also, technically, a fail in this case. Sticking to my plan of call GP tomorrow, I gave up on curing the pain, took pain relief and went to bed. In the middle of the night I woke up, as one does, to go to the toilet. Just one minor problem: I couldn’t lift myself up from the supine position without the pain under my left scapula wiping me out. I spent some time figuring out how to use my right side to get myself out of bed without contracting any muscles on the left. Yay! I’m standing! Woo hoo! Phew! Did what needed to be done and had the same issue laying back down. But I’d figured out what movement I could and couldn’t do, so I managed.

When morning came, no improvement, same problems. Called GP clinic, the advice was go to ED. So I did. One aspect that amazed me was this: despite the pain in trying to sit up or lay down, I could do my bra up with no problem. Our bodies are weird or amazing, depending on your perspective. Which ED to go to? The private hospital ED would cost me $480 out-of-pocket as the safety net threshold only applies to out-of-hospital charges! I decided the public hospital ED fitted my budget better. I trammed to ED. Mentioned to attending doctor about the tooth. I suggested maybe I have a tooth infection that is driving a PsA flare. Doctor looked at tooth and was very concerned about how loose it (now) was. This was considered a very likely scenario. Plan of action was I would go to dentist on Monday to see about tooth. ED gave me five Palexia to get me through to Monday if needed. I went home. By then the shoulder was miraculously perfectly fine. I rested, as I figure that was probably a sensible approach to the situation. I could almost hear my GP saying, “Just rest!”

By Sunday, I was going stir crazy from resting. It is, as we know, not really my style. I decided a one kilometre walk around the block was needed. As I walked, I felt a twinge in my right hip flexor. Uh oh. I also felt a little dizzy and had to lean against a fence for a few seconds. Flash back to my October event right there. It is a very minor twinge, nothing even remotely severe, I figured it would pass, just my body being flary given the tooth infection. Looking back on my notes though, my temp that morning had been 39.1 and I’d woken in a freezing/boiling cycle with a sore hip. Had forgotten all about the hip until I revisited my notes just now. Notes are kept for my GP, symptom diary. Useful, by the way, as we forget things. How did I forget I’d woken with a sore hip that morning? Obviously it didn’t last long, replaced by the hip flexor specifically, later in the day.

I was hopeful, wasn’t I? 2 am Monday I woke up to go to the toilet. I couldn’t move my right leg due to the pain. I lifted my leg off the bed with my arms so I didn’t have to contract leg muscles, grabbed the walking stick that lives beside the bed for just such events and got myself to the bathroom and back. Now, half of me was saying, “this is just another flare” and the other half of me was asking “but what if it isn’t?”. I already know from my October event that if I called Nurse On Call, given my history, they will call an ambulance. I figure I might as well save the time and call them myself. We decided I was not P1 (very reasonable), so I was allocated to the queue. While in the queue I had to somehow get to the front door to unlock it. While I didn’t time that journey, it felt like half an hour and I had to rest on the couch before heading back to bed. And find a nightdress. Ambos don’t need naked patients. And the recording had said have a mask on.

Ambos arrived and decided to do Virtual Emergency Department. That doctor advised “take the patient to ED”. So that’s what happened. I got my first try of the “green whistle”, that was exciting! Hey, we have to look for the positives and innovations are positives! It was pouring rain as I got in the ambulance, we all got wet.

Kind of a rinse and repeat of Saturday with a few extras thrown in: x-ray of leg/hip, x-ray of teeth, antibiotics prescribed. I called my dentist from ED, but dentist was closed. Thankfully, dentist called back and booked me in for Tuesday. CRP had jumped from 28 on Saturday to 85 on Monday. ESR was now 61. Definitely something going on. Tooth again got the blame. Has this happened before, I was asked. Actually, aside from Saturday, yes, it has. October 25 my wrist was so sore I couldn’t even cut cheese. November 04 my hands had been swollen and sore, but I’d put that down to a reaction to my second Shingrix vaccine. November 25 I had woken with an extremely painful left leg (probably ITB). All these things had resolved within 24 hours though. Suggestion is made that perhaps I’ve had a low grade tooth infection for a few weeks but as I didn’t have pain in the tooth, I didn’t realise.

That’s when I first thought back to my October event. Now, as luck would have it, I had a gastroenterologist appointment for Monday afternoon. From ED I called to reschedule. That appointment happened yesterday. My first question to her was “Can a tooth infection upset the gut?” Yes, was the answer. Her advice, on hearing the story, is we get the tooth sorted first, manage the gut in the meantime, then reassess. After all, the gut was determined to be the cause of my October event, but now we are considering the tooth was causing the gut to misbehave.

Am I tearing my hair out? YES! I’m over it! I’ve missed most of my exercise routine for the week, I’m losing a tooth on Monday and that will require my partial plate to be remodelled after the extraction site has healed. I now realise we may have all been chasing down wrong paths for a month and that is no-one’s fault – it is a fact of life with us complex comorbid patients. An elevated CRP isn’t a specific indicator, nor is an elevated ESR. I didn’t realise I had an infected tooth until late last week so I couldn’t tell anyone I had an infected tooth. Also, we do get used to waking up with a sore hand one day or a sore foot another day – we often pay little heed to these “glitches” – they become our normal. Except when they aren’t.

My GP rang proactively arranging an appointment for me for the Tuesday evening. I am sure she stayed late to fit me in. She wanted to make sure we now had all our ducks in a row and I love her for it. I’ve also written to my rheumatologist to bring him into the loop, although there’s not much he can do about teeth!

To top it off, at this time there are shortages of antibiotics. So I’ve got a single course of ten tablets. Let’s hope that is enough to ensure the local anaesthetic works! I needed two courses to clear the May/June tooth infection.

It isn’t over – yesterday the knuckle on my right forefinger decided to develop a bump. Redder than my camera captured. Interestingly that particular knuckle has a piece of cup stuck in there – a prime PsA attack site, therefore, I think. It’s OK, it too will subside. Once the tooth is gone. It seems possible the infection has also impacted my sinuses, so I’ll be interested to see if my blocked nose at night issue resolves as well. That would be good!

For those wondering why would a tooth infection cause PsA flares, it kinda goes like this. As with many treatments, my treatment for PsA suppresses the immune system, so not only are we more susceptible to infections in the first place, we are also less able to fight them off. The quote below may be scary reading to novices, but we live with it. Note the higher risk of developing shingles, which is why I had the shingles vaccine. A normal, healthy person may have fought off the tooth infection without batting an eyelid.

Serious infections. RINVOQ can lower your ability to fight infections. Serious infections have happened while taking RINVOQ, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider (HCP) should test you for TB before starting RINVOQ and check you closely for signs and symptoms of TB during treatment with RINVOQ. You should not start taking RINVOQ if you have any kind of infection unless your HCP tells you it is okay. If you get a serious infection, your HCP may stop your treatment until your infection is controlled. You may be at higher risk of developing shingles (herpes zoster).

https://www.rinvoq.com/

The existence of an infection though, can stir up the immune functionality we do have left and then PsA sees a crack in the wall and tries to break through. That’s a very lay description! I’ll never forget being told that my biggest Covid-19 risk factor was considered to be my underlying inflammatory condition. PsA and Covid-19 could have quite a party.

Let us look at the current news topic of pharmacists prescribing and the argument for Dental being covered by Medicare. Based on my symptoms, I could have many things and I have a complex medical status to consider prior to any treatment. I am knowledgeable about my own medical situation, but many patients are not and the knowledge and experience of the GP is invaluable. I have great faith in my pharmacist – I seek out their advice re drug interactions and what med to not take with what other med every time. I’m not as confident a pharmacist has the medical knowledge to safely and effectively diagnose me and then prescribe the right medication for me. The second point, dental coverage, should be obvious. My teeth have caused considerable angst and pain and are costing me dollars other patients may not have. It is false economy to not ensure we look after people’s teeth. Teeth lead to many other health problems, some extremely serious, which cost a lot more to treat that fixing a tooth initially.

In closing I would like to emphasise none of the above is in itself, for me, medically serious. My son-in-law is fighting leukemia – THAT is medically serious. That is life threatening. My challenges have been been painful, probably costly to the health system and certainly inconvenient. Yes, the outcome could theoretically (based on symptoms) have been more serious, but it isn’t. However, all chronic illness patients live with this complexity and disruption to our lives reasonably constantly. And every day we grow in number. THAT I discuss in detail in Will Society Adapt? When? How?

We All Get Those Weeks

Perfectly healthy people get “those weeks”. Chronically ill people get them too, even us retired ones. My purpose in sharing my week is to assure other chronically ill people, you are NOT alone. Things just go nuts sometimes.

For a few weeks I had been experiencing a recurring tightness in my chest, off and on. Then I was getting spasmodic nausea episodes again. Occasionally I was feeling lightheadedness. My gut feeling was along the lines of my actual gut playing up, BUT to be on the safe side, I called Nurse On Call. Because of my medical status and my symptoms, the nurse called an ambulance, so I ended up in the Emergency Department (ED). This was Thursday, October 20.

Why did I call Nurse On Call? Well, last time I tried to walk off left upper quadrant abdominal pain and ended up taking myself to ED, my GP was not overly impressed with my self-care solution, so I thought this time I’d be more sensible.

Even so, I felt like an absolute fraud – I was convinced someone else needed that ambulance more than I did. In ED they did the appropriate blood tests, which all were, thankfully, negative. They organised a NM Myocardial Perfusion stress test for the morning to categorically rule out my heart as the cause of my symptoms. I was allowed to go home.

Specific grabs from the paperwork

Prior to my trip to Nuclear Medicine the next morning, I prepared my breakfast (I had checked I didn’t need to fast) and made my coffee. I then re-read the paperwork (luckily). For 24 hours before the test, NO caffeine. The cup of coffee went down the sink. Water it was.

The stress test went without a hitch and despite my known nocturnal AV block, my heart is functioning very well.

The general consensus was at this point back to my gut (after we had discounted gall stones on the basis I have no gall bladder). So I have doubled my Somac (Pantoprazole) as per previous gastroenterological advice.

Missed my weight training on the Thursday. Not happy. Given I now had the heart all clear, I was back lifting weights on Saturday. However, I was modifying my workout because that morning I had woken up with VERY painful hands and fingers. Took 15 mg of Prednisolone per my rheumatologist’s instructions for situations like that. If it wasn’t one thing, it was another. The inflammation in my hands was not going to impact my lower body!

I took Sunday as an active rest day.

Yesterday (Monday) I lost my grip on the coffee jar. It hit the coffee mug. The coffee mug hit the floor.

My coffee mug!

Later in the day I went to cut some cheese. Cheese is soft, right? My right wrist was so painful I could not cut the cheese. The wrist wasn’t sore just hanging around doing nothing, but I could not cut cheese. So 15 mg Prednisolone again this morning (yes, could have taken it last night, but it interferes with sleep, so this morning it was). THIS time I will take it for three days.

Also yesterday I had to venture into dangerous territory – public transport. You see, as well as the above, I had noticed my gums were receding slightly. I needed a trip to the dentist and public transport is the only real option as parking is a nightmare in the city.

I’m masked for public transport!

Virtually no-one was masked. Going in wasn’t so bad as there were not many other passengers: coming home was a crowded carriage and I counted only two other people wearing masks and one of those two was clearly a health care worker. Now mandatory isolation has been done away with, I can only imagine how many Covid-19 infectious people might have been on that train. Hence the full force mask! That is not a typo, by the way – I do mean full force!

To digress slightly, I have been working with a team on a petition to reinstate mandatory Covid-19 isolation. My suddenly having these personal health glitches was not helping as I was not contributing as I wanted to. As you are reading this, please visit, read, sign and share the petition! We have over 12,300 signatures so far!

All the while my guts were not exactly behaving, but I’m not going into details, that is more than enough information! As I am typing this, I have needed another nausea wafer, but at least there is improvement from last week!

Today it was back to the GP to confirm I am doing all the right things. Then it was off to the gym, again being careful of my hands and adapting my workout. When I came out of the gym, I looked as red as my lipstick, but sadly the darn camera did not capture the redness! I was annoyed at my camera!

After my workout

Despite all of this, I have still kept up my step count, except for the Thursday. I’ve still found flowers, including the great foxglove which reminded me of my childhood.

My walking flowers

So that is my week so far. Some of us will get much worse weeks. After all, I’m just juggling sore hands and a grumpy gut. Even when “mildish”, these weeks can be disruptive. I’ve had difficulty concentrating. I haven’t got the things done I wanted to do this week. I’ve been very grateful I am retired as the fact I’ve been below par hasn’t impacted work colleagues or work deadlines. I still managed to paint my nails (of course).

To friends and family members of chronically ill people, please be aware that even though we may essentially have our conditions under control, well managed: we will still have “those weeks”. Make your patient a cup of coffee, take them out to lunch if they are up for it. Be gentle.

Reminder: this also links into the topic discussed in “We Don’t All Look Sick! Invisible Illness“. Please read that too if you have a moment.

What is Psoriatic Arthritis?

I mention having psoriatic arthritis (PsA), yet I’ve never explained in layman’s terms what it actually is. This is partly because initially I was diagnosed with rheumatoid arthritis (RA). There is reasonable general knowledge about RA so I didn’t write about it specifically at the time. There are over 100 forms of arthritis – PsA is just one.

PsA is also not to be confused with PSA. PSA stands for Prostrate-Specific Antigen. Usually in reference to the PSA test. In text the difference is clear, but I have had some funny looks from people when I’ve spoken PsA. Even in writing, for example on Twitter, people get confused thinking I’ve just made a typo with the little “s”, but I’m a woman, so….. how could PSA apply to me? It doesn’t. PsA does.

PsA is not nearly as well known as RA is. I know a fellow patient who just tells people she has RA rather than have to repeatedly explain what PsA is. All the PsA patients I know have run into healthcare workers who’ve never heard of it. It is quite similar in some respects to RA, but there are some major differences.

As the name implies, it is related to the skin condition psoriasis. PsA was officially recognized as a distinct disease in 1964 by the (now) American College of Rheumatology. The prevalence in the general population is estimated at around 1%, however the estimates vary. I’ve cited 1% as it is the figure I see most often. PsA is not technically a rare disease. While definitions of rare diseases are different in different jurisdictions, most definitions are around a prevalence in the population of 0.05%. Even so, at 1% we are not the most common patients around either!

Up to 30% of people with the skin condition psoriasis may develop PsA. I’ve seen numbers as high as 42% given in some studies, but for general understanding, 30% will suffice.

For readers who have never seen psoriasis there are different types and they look different. Here is my ankle during one recent flare as an example.

Psoriasis

The genetics of PsA are still being investigated, but strong genetic links have been found. It tends, therefore, to run in families. My doctors and I suspect I am third generation.

PsA is classified as a spondyloarthropathy. It is an IMID – immune mediated inflammatory disease. There are five different types of PsA and a person may have more than one type:

  • Symmetric arthritis
  • Asymmetric arthritis
  • Distal interphalangeal (DIP) predominant
  • Spondylitis
  • Arthritis mutilans

PsA can affect just about any joint in the body, it is not fussy (RA is a little more choosy). It moves around the body. It loves (in my case) entheses – of which we have more than 100! Entheses are where a ligament or tendon inserts into the bone. It can be very “ouchy”. It is also a disease that affects men and women equally.

Getting a formal diagnosis can still prove difficult. I’m a classic example as I was originally diagnosed with RA. I did not have really visible psoriasis at the time. My psoriasis blew up while I was on hydroxychloroquine – this was the driver of my new diagnosis. Hydroxychloroquine has been shown to exacerbate or induce psoriasis. PsA will also express itself in some patients before the skin condition presents itself. There are no easy tests to diagnose PsA, it is often a process of elimination of other possibilities. I was fortunate to be diagnosed and therefore treated early in my journey. We slowed the progression of the disease before too much damage was done.

Comorbidities are common:

Epidemiological studies have shown that patients with psoriatic arthritis (PsA) are often affected by numerous comorbidities that carry significant morbidity and mortality. Reported comorbidities include diabetes mellitus, obesity, metabolic syndrome, cardiovascular diseases, osteoporosis, inflammatory bowel disease, autoimmune eye disease, non-alcoholic fatty liver disease, depression, and fibromyalgia. All health care providers for patients with PsA should recognize and monitor those comorbidities, as well as understand their effect on patient management to ensure an optimal clinical outcome.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5298365/

I’ve had cysts develop that in one case was dissecting a leg muscle, in another case the cyst drilled a “huge” (that’s a quote from the surgeon) hole in a toe bone and I needed a bone graft. This sort of thing won’t happen to every patient, of course, but is an illustration of the sorts of challenges patients face. Nodules can grow on tendons – I have a few of those. Cognitive impairment, otherwise known as “brain fog” is common. Fingers and toes can swell to look like sausages, this is called dactylitis. I’ve had a whole hand swell up, while the other remained fine. Here is a comparison of my hands at the time.

Veins and tendons visible on the right, not so much on the left

I’m slowly losing fine motor control of my fingers. It is annoying, but manageable so far.

Malaise is another symptom that I don’t experience often, but it does pop up from time to time. Just feeling crappy, basically. Feeling very blah! Like pain flares, malaise can come and go unpredictably.

Fatigue or lethargy is a symptom that doesn’t get nearly enough attention. It can be debilitating and impact on the patient’s ability to manage the condition appropriately. Exercise is considered critical in the management of PsA, but if the patient has no energy, nothing in the tank, exercise can be challenging. This improves with exercise, over time, but it does take dedication on the part of the patient. Eating and sleeping properly go without saying, naturally!

Flares can appear out of nowhere and disappear as quickly as they arrived. I recall once waking with an excruciatingly painful wrist. Eight hours later it was 100% normal. Flares may also linger. I’ve had steroid shots in both shoulders, vastly different to my painful wrist experience. PsA is notoriously unpredictable. It can destroy your finger and toe nails. Anyone who follows me knows, for me that would be a devastating event! Hence the feature photo of my pride & joy!

No, I haven’t specifically mentioned pain, have I? Everyone’s pain is different. For the most part (aside from the occasional flare or when a medication stops working) I am pain free. That’s due to a combination of factors: early diagnosis therefore early treatment, exercise, appropriate medication. When my previous medication stopped working, I was in heaps of pain. I detailed that in “I Sat in my Car and Cried“.

This is not in any way a medical article, it is a short summary of what PsA is and can be for the newly diagnosed and family and friends. Below I have listed authoritative links readers may find relevant. I will update this list from time to time as new articles become available. Whatever I publish today will likely be out of date tomorrow as PsA is a condition that medical science is still investigating and learning about. The photos I have used are my own.

Informative Links:

Psoriatic arthritis: epidemiology, clinical features, course, and outcome (BMJ)

The Genetics of Psoriasis and Psoriatic Arthritis (The Journal of Rheumatology)

Genetics of psoriatic arthritis (PubMed)

Types of psoriatic arthritis (Psoriatic Arthritis Info, sponsored by AbbVie)

Spondyloarthropathies (HealthLinkBC)

Enthesitis and PsA (Arthritis Foundation)

Psoriatic arthritis – diagnosis (Mayo Clinic)

Understanding Arthritis (Arthritis Australia)

We Don’t All Look Sick: Invisible Illness (Limberation)

We Need Mental Health as well as Physical Health (Limberation)

We Don’t All Look Sick! Invisible Illness

Many people who are classified as chronically ill, myself included, don’t look sick or ill. Healthy people can find this a bit of a conundrum. We can be accused of “faking it” or being a hypochondriac. Even worse, we can be criticised for doing the very things we must do to manage our various conditions. With my condition, psoriatic arthritis, I must exercise. This just seems to be a red rag to a bull for the doubters because their understanding of “sick” doesn’t include things like the leg press or lat pull down in the gym!

I wonder how many chronically ill people are actually dissuaded from doing the very things they should do because of this attitude of doubt they encounter from others. That is a study for an enterprising young exercise physiologist and a psychologist to undertake! I’m just posing the question!

In 2018 I wrote “You Look So Healthy!” which was a look at how our emotions can react to being complimented for looking “so good for a sick person”. I also looked at society’s overall acceptance of chronic illness in my more recent article, “Will Society Adapt? When? How?“.

Please be aware not all conditions that MAY be invisible are invisible for everyone. To take psoriatic arthritis as an example, it is invisible in my case SO FAR (and I hope to keep it that way). Other psoriatic arthritis patients will have visible indications of their condition. It may be deformed joints or the need for mobility aids. In fact, psoriatic arthritis is a condition that may wax and wane – so I could be using a walking stick today, but not tomorrow.

People often look for a “gotcha” – and that is very annoying. Having to constantly explain that being chronically ill does NOT mean we have to be in hospital with a cannula in our hand, that yes we can walk 4 kilometres a day but we are still clinically sick is very, very tiring. As I have said before, the reaction I get from the public if I go out with a walking stick is very different to the reaction I get without it. In some respects this is fair enough as without the walking stick there is no indication to anyone that I am not perfectly healthy. However, if I tell someone I need a seat on the tram, I don’t expect to be put through the Spanish Inquisition!

Today I’m looking at the specific question of why, given such a large percentage of the population has one if not more chronic conditions (comorbidity is common), society is not more aware of invisible illness. To use myself as an example, why do people find it difficult to understand that I can do the leg press at the gym, but I can’t clean my shower recess without falling in a heap? For those wondering, it is due to damage in my lumbar spine – which you can’t see. It is invisible.

I sometimes get the strong impression I am not supposed to paint my nails, wear lipstick, or wear my extravagantly floral (happy) leggings. I am supposed to “look unwell”. Why? I think I speak for most of us when I say we go to considerable lengths to NOT look unwell! Doing so makes us happier.

I remember going to my GP once, a while ago now. I was in a flare. My shoulders and wrists were, essentially, unusable. I couldn’t put a bra on (so wore the most bulky windcheater I own to hide the fact). I managed to pull on some tracksuit pants – leggings weren’t happening. Lipstick certainly wasn’t happening. I called a taxi as I didn’t feel safe to drive. “Oh, you are the worst I’ve ever seen you”, she said. True, she had never seen me in such a condition. Had it been my knees or hips or ankles, she would not have seen me in that state: it was only because the joints I use to “look good” were “feeling bad”. Would my GP have recognised how sick I was, though, if I still “looked good”? While only she can answer that, I have been a patient of hers for quite some time now – I think she gets it. But not everyone does.

I would have had NO trouble convincing anyone I was sick that day! But that is not how I want to live my life. It isn’t how I want to look everyday. I don’t want to have to look sick for you to believe I have a chronic condition and trust my requests for certain adjustments.

I don’t want to live my life justifying why I DON’T look like that every day! A friend of mine has MS and he has a card, the size of a credit card, issued by the MS Society confirming his health status. Like me, he doesn’t look ill either, most of the time, to the uninitiated. Maybe a card would be appropriate for more of us.

Above I mentioned walking 4 kilometres. Let me assure you that 4 kilometres is very carefully planned out. I don’t walk out the door and just walk 4 kilometres in one hit. I do hope to pace up to doing that again, but at the moment I’m on the comeback trail. Sometimes, no matter how well we manage our conditions, we have setbacks. We have to pace up again to get back to where we were, provided we can.

I cite myself as having an invisible illness NOW – in ten years it may not be so invisible.

If you are standing in a group of ten randomly selected people, statistically at least four of them will have a chronic condition, maybe more than one chronic condition. There may be absolutely no visible indication. Some readers may have read my rant about public transport – if not, hit that link and read up.

All I ask is don’t assume that a person who looks 100% healthy is actually healthy. Many of the population is not – and we shouldn’t have to explain it every day.

Not All Shingles Vaccines Are The Same

I recently discovered not all shingles vaccines are the same. Nor are they equally available in Australia. As I write this, there is talk of changes, but as of right now, it is costing me roughly $600 to be vaccinated against shingles. Why is shingles important to a person with a chronic illness? Because we may be more susceptible, depending on our underlying condition/(s) and our medications. None of us want yet another health issue to deal with.

What is shingles? Essentially, a reactivation of chickenpox. So, you can’t get shingles unless you’ve previously had chickenpox. You can catch chickenpox from someone who has shingles though. Most younger people have been vaccinated against chickenpox, but even my children (now in their forties) had chickenpox before the chickenpox vaccine was available. If you have never had chickenpox and are not vaccinated against chickenpox, get vaccinated!

It is possible to get shingles more than once, so don’t think that if you have already had it you’ll be fine. Talk to your GP.

“But I was vaccinated for free”, you cry. Lucky you. The previous Australian government changed the rules. As it stands at the moment, there is a vaccine, Zostavax, available for free to those aged between 70 and 79. “So just wait until you are 70”, you say? Well, no, that doesn’t work for me either because I can’t have Zostavax. Ever. It contains live virus and because of my medications I cannot have any vaccine that contains live virus. I am not alone, there are many, oh, so many of us. Many medications stipulate the patient must not have live vaccines.

Those under 70 can pay for Zostavax if they want to have it earlier than reaching 70 years of age. The current list price is $192.50 and only one shot is needed. Quite a price variance. But that’s the vaccine a large cohort of the population, of which I am a member, can’t have. There is also, I think (depending how one reads the bureaucratic wording), provision for certain at risk people under 70 to have the free vaccine for free before reaching 70, but the criteria is complicated and I gave up trying to decipher it: talk to your GP!

So where does that leave us? It leaves us paying $281 (cheapest price I’ve found) for each of the required two vials of the Shingrix vaccine. Two shots, between two and six months apart, so $562 for the vaccine. Then there are the GP consultation fees to get the prescriptions, the travel costs to the GP and the pharmacy, possibly another GP fee for the actual injection. For some, it may total more than $600. This vaccine is not (yet) free when we reach 70.

As I can never have the free Zostavax vaccine and once we are over 50 the risk of shingles increases rapidly, I decided to bite the budget bullet and have it now. Stress is also considered a trigger for the onset of shingles and I have been under considerable “life is complicated” stress lately – the last thing I need right now is to be hospitalised with shingles. Shingles can also lead to longer term health problems, such as postherpetic neuralgia (PHN).

Then there is the question of vaccine efficacy. Various numbers are given in various reports, but essentially Shingrix is about twice as effective as Zostavax. This Harvard link cites more than 90% for Shingrix and 51% for Zostavax. The numbers are less for those of us with compromised/suppressed immune systems.

One has to question the logic of using a less effective vaccine when the costs of hospital treatment for shingles and related complications is surely much more expensive that the cost of Shingrix. While I have no doubt chickenpox and shingles will never entirely disappear, it is those of us old enough to have caught chickenpox before a vaccine became available that at risk – so the numbers and therefore the costs reduce over time. I fully support making the more effective vaccine available on the Pharmaceutical Benefits Scheme for those over 50. Talk to your local member of parliament.

As for the photo for this article: some people are squeamish so I didn’t put a photo of the lesions! There is a link below with images for the braver readers!

Information Links you may find useful:

National Immunisation Program Schedule

Shingles (herpes zoster) immunisation service

What Everyone Should Know about the Shingles Vaccine (Shingrix) (CDC)

Shingles: Clinical Overview & Complications (CDC)

Slideshow: A Visual Guide to Shingles

ABC Radio National – Shingles follow-up (podcast with Norman Swan)

Footnote: If you are unlucky enough to develop shingles, there are antiviral treatments, but they must be started within 3 days of the rash developing. Details can be found here. My view is prevention is better than cure.

A Tale of Two Days

I had a typical chronic illness experience this week. I’m writing this article particularly for family, friends and colleagues of patients, to increase understanding in the community.

Edited to add: After publishing this I decided to add a personal thought. Other chronic illness patients may or may not agree with me, so check first! We are not looking for sympathy. We definitely aren’t looking to be told to try extra Vitamin C, D or K. We don’t want, “But have you tried….” because trust me when I say this, most of us have agreed our treatment plans WITH OUR MEDICAL PROFESSIONALS.

So what do we want? Just acceptance! Accept what we say at face value, don’t doubt us. We aren’t making it up. It is what it is and many of us are very used to it and just get on with life as best we can. We don’t want a fuss. I’m not saying we don’t welcome kind thoughts or offers of assistance. Yes, you can certainly make me a nice cup of coffee or tea, that would be lovely, thank you. But the most important support you can offer is acceptance and understanding without doubting what we say and without making a fuss as if you expect us to keel over in the next hour. This may not be your normal, but it is our normal.

We hear and talk a lot about chronic pain in relation to chronic illness, but as we know from my last article, I’m pretty much pain free on my new medication. That is very pleasing. Pain is not the only debilitating issue we face.

Wednesday night I did not sleep at all well. I had an intense two hour meeting and worked an extra hour on Wednesday – did that contribute to the bad sleep? No idea. Woke up Thursday morning feeling shit. There is no other word for it. While I do try to stay polite in my articles, the lovely medical word I like, malaise, didn’t quite cover it. Unwell didn’t cover it. Clinically, my experience would likely have been classified as malaise, but that is such a nice sounding word it didn’t cover how I would have described the feeling. I want to stress, no pain. Pain is NOT our only problem.

I doubted I could actually work, but we had a 9:30 meeting scheduled so I dressed, braved the world. When I say I braved the world, let’s not get too ambitious here! I work from home, so braving the world entailed throwing my hair in a bun, putting on some clothes and some lipstick and sitting in front of my laptop camera for a Teams meeting! I did warn my colleagues I felt crap and doubted I’d make it through the day but would work as long as I could. Stomach pains then arrived, along with a couple of trips to the bathroom – I think you get the picture.

However, by 1 pm I felt relatively normal and completed my work day (quite productively, as it turned out) although I was a little hyper, which made no sense either. Logged off at 4 pm, sat down in an armchair and a wave of nausea engulfed me. My stomach felt funny, just funny. I was a little dizzy. The unwellness was back with a vengeance. I had a 5 pm appointment with a girlfriend for iced coffee and cake. There was no way I was going to be able to drive or have cake. I cancelled. Dug deep in my medication supply and swallowed anti-nausea medication and took a Somac (Pantoprazole). By 6:30 pm I felt marginally better. Went to bed reasonably early (for me, that is).

Slept like a log! Best night of sleep for the last two years, I think. Woke up Friday morning all cylinders firing! Went for a 1 kilometre walk before work. Worked my usual hours without issue. Waited for the temperature to drop (the weather temperature, not mine, mine was fine) in the evening and walked another 1.3 kilometres at just after 7 pm, before the rain arrived.

This morning (Saturday) I am giving my body it’s usual Saturday morning recovery-from-the-work-week time and I will head to the gym this afternoon for a weight training session.

So what on earth happened Thursday? I have NO idea. I hadn’t eaten anything different, I hadn’t been out partying, I hadn’t overly exerted myself physically on the Wednesday. I suspect the bad sleep wasn’t the cause, but a symptom – of course I can’t prove that.

These episodes, while not painful, are very restrictive and affect quality of life. I’ve been trying to think of a way to describe the situation that healthy people may relate to. You see, most people have experienced an episode of pain in their life: a toothache, a twisted ankle, recovered from surgery, headaches, a broken bone, a sports injury, something. Although healthy people might struggle to really understand chronic pain, most do understand pain itself at some level and know it exists in different degrees of severity. Most people who have not experienced malaise have no similar experience to inform their understanding of what the patient is going through. We look fine, no bandages, stitches, crutches – so what’s wrong with us?

The closest I can come up with is imagine you have a case of influenza but without the temperature, runny nose and headache. You just feel shit. Throw in a bit of lightheadedness and nausea (but no throwing up) for good measure. Don’t confused malaise with fatigue or lethargy, although they can sometimes arrive hand-in-hand.

Healthy people (e.g. family, friends, colleagues) can find this difficult to comprehend. It arrives out of nowhere, lasts an indeterminate time, may fluctuate and is extremely annoying and quite debilitating. I don’t like cancelling coffee dates with friends. The patient literally may not be able to do anything. I couldn’t on Thursday afternoon/evening, I just sat until I went to bed. Feeling extremely annoyed, but there was little I could do about the situation. It may not happen again for six months. It might happen again tomorrow. We never know.

If someone you know has these episodes, be gentle and supportive, even if you don’t understand. Trust me, we don’t like it either.

(Mostly) No Pain is FANTASTIC!

A few of my recent articles have been quite serious, so it is time to celebrate progress! After starting my new medication on January 14, 2022 I am happy to report I’m functional again! Friday I started Week 7 of my new medication and I very pleased with progress. Let’s hope it keeps working!

Readers may recall my list of painful bits from I Sat in My Care and I Cried. It was a pretty long list.

What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

Today I can happily report all of that list has resolved except the shoulders and the plantar fasciitis. While I was on Prednisolone and the new medication together, the shoulders and the plantar fasciitis were barely noticeable, but as I tapered off the Prednisolone both reappeared. The plantar fasciitis is minor, only noticeable when I first get out of bed in the morning and hopefully will continue to improve the longer I am on the new medication.

The shoulders I am not so sure about. At my age and with prior injuries, I suspect the root cause of the shoulders may not be psoriatic arthritis (although it is undoubtedly not helping). The right shoulder is the worst of the two and that is the shoulder that has in the past suffered a torn rotator cuff. I’m doing lots of remedial exercises which will hopefully improve the situation (I’ll admit to letting those lapse while I was battling everything else). It is time to focus.

Other than that it is great to be able to do all these things again, pain free:

  • Fasten my bra (shoulders are at least allowing that)
  • Hold my full coffee cup in one hand (wrists)
  • Get out of bed without mobility aids (crutches or walking stick)
  • Sit down and stand up without immense difficulty (quads & glutes weren’t firing)
  • Be able to clench my fists (no, I’m not planning on using my fists!)
  • Turn taps on and off without pain (fingers & wrists)
  • WALK!!!!! (mainly ankles, although right knee & left hip had spasmodically interrupted)

That is not an exhaustive list, of course, but hopefully sufficiently illustrative! Functionally, I am almost back to (my version of) normal. I’ve been to the gym and done some hydrotherapy.

The only downside seems to be lethargy. I am quite tired. This may be temporary and may be due to my body adjusting to the new medication, the (tapered) cessation of Prednisolone and quite simply normal life things such as work-related stress. In order to give my body the best chance I have negotiated with my employer to drop my working hours to 24 hours per week. Initially this is for a temporary period of six months and then we will reassess.

The tiredness could possibly be my thyroid firing back up, although based on my last ultrasound we doubt that. Even so, that fact I do have an unhealthy thyroid cannot be overlooked. I’m due for monitoring checks again in April. I was, I gather, a little unusual as a radioactive iodine recipient. Many patients’ thyroid function becomes hypoactive after the treatment but mine never (not yet anyway) did. Both hypoactive (underactive) and hyperactive (overactive) thyroid conditions can result in tiredness/lethargy. Mine, theoretically, could go either way!

I am very concerned about the lack of strength training I have done over recent months as retaining muscle strength really is very important with this and many other arthritic conditions. However, I can’t rush back, I need to pace up again. That is part of the reason for reducing my working hours.

The shoulders, particularly the right one, may be being exacerbated by typing and mouse use. This is something that will also be reduced by reducing my working hours. Of course my bank account is NOT going to like less income, but that is simply a fact of life for those of us with chronic conditions: we have to make our bodies a higher priority than our finances, otherwise we end up with no finances at all as we lose the ability to work.

Overall, pretty darn happy! Of course, there are no guarantees. I’ll just enjoy the improvements while I have them! This gives me space to concentrate on rehabilitating the grumpy shoulders. I’m seeing my myotherapist regularly at the moment to assist.

Concurrent objective is to rid myself of the weight gain from the Prednisolone – there’s always something!

If you are interested in the fascia of the body, this is a great video! This is related to my seeking myotherapy treatment at the moment. More on this another day.

So, About the Safety Nets Thresholds

Introduction

Some years ago in Australia it was possible to claim a certain amount of out-of-pocket medical expenses on one’s tax return at the end of the year.

A few years ago, this changed. It was replaced with a system of higher rebates once a certain level of out-of-pocket expenses had been reached for the calendar year. This is beneficial, as the patients don’t have to wait for that money to be received once a year at tax time.

I have discerned some confusion about how this all works, so this article is an attempt to put “how it all works” in simple terms.

The one aspect I think is MOST important is registering as a family or couple, especially if you have a person in your family with a chronic or underlying condition. Watch out for that heading below!

Please note if you are reading this article after 2022, you may need to locate current links. The links given herein are current as at the time of writing, for 2022.

PBS and Medicare Thresholds

The Pharmaceutical Benefits Scheme (PBS) and Medicare Benefits Schedule (MBS) are managed differently and have different safety nets thresholds. It is important that both are understood.

Medicare is managed centrally and the details and your current status is easily accessed in your Medicare app if you have it installed on your phone or via MyGov/Medicare.

Pharmaceutical thresholds are tracked by your pharmacist, so if you get prescriptions from different pharmacies on a regular basis, you could be missing out.

Medicare Safety Nets Thresholds

The Medicare Safety Net Thresholds are set every year for the calendar year. Once you reach the threshold applicable to you, you get a higher rebate. What can this mean in dollars? Please note the below example is across two different years, so the rebates shown may have moved slightly. Also, different item numbers may attract the same consultation fee but have different rebates based on the item number. For example, a psychology consultation fee may also be charged at $210, but as it is a different item number than a GP consultation, the rebate will be different.

Given the above caveat, the below is sufficient for illustration purposes and the examples are actual transactions of mine.

StatusConsultation FeeRebateOut-of-pocket
Before I reach my threshold (from start 2022)210.0075.75134.25
After I reach my threshold (from end 2021)210.00183.0526.95

As you can see, after I reach my threshold, my out-of-pocket is reduced by $107.30 (for this consultation fee for this MBS item number).

https://www.servicesaustralia.gov.au/what-are-medicare-safety-nets-thresholds?context=22001

Note all of these refer to “out of hospital” services. If you receive a service in a private hospital as an inpatient, the out-of-pocket costs will not count towards reaching your threshold (although the graphic above doesn’t state that), nor will you receive the higher rebate for any services you receive as an inpatient. I know this from personal experience!

Remember imaging and pathology fall under this scope.

Verified & Unverified Costs

In most cases these days, you pay for a consultation at the time of the consultation and the practitioner’s staff submit your Medicare claim for you. In that case the cost is a verified cost. However, if this does not happen, be aware there will be extra steps.

Verified costs are when you pay your doctor’s fee before you make a claim from us. When this happens, your gap amount and out of pocket costs count towards your thresholds. 

Unverified costs are when you don’t pay your doctor’s fee before you claim from us. When this happens, your gap amount and out of pocket costs don’t count towards your thresholds.

https://www.servicesaustralia.gov.au/verified-and-unverified-costs?context=22001

Once you pay the doctor the balance and provide that receipt to Medicare, then the gap payment will be considered verified. Make sure you do that!

Registering as a Family or Couple

Why is this important? Let’s assume you are an Aged Pension couple. If you are not registered as a couple, you each, individually, have to reach that magic $717.90 out-of-pocket expenditure to receive the maximum increased rebates. That is, together you need to reach a total of $1,435.80 before you both get increased rebates. One of you may receive increased rebates before the other, if one of you has higher medical costs.

If you are registered as a couple, then you both contribute to a single threshold: $717.90.

Being on the same Medicare card does NOT mean you are registered as a couple or a family. I suspect this is a result of the transition from the old tax deduction method to the thresholds. You need to actually register.

If you’re part of a family or couple, you can register as a family to combine your costs. This means you’re more likely to reach the thresholds sooner. Even if all family members are on the same Medicare card, you’ll still need to register.

https://www.servicesaustralia.gov.au/how-to-register-for-medicare-safety-nets?context=22001

You can see if you are, perhaps, a family of five, especially if a family member has high medical costs, registering as a family for the Safety Net is a very sensible move. There is a BIG difference between reaching $2,249.80 per year for each of you, or for all of you combined.

Pharmaceutical Benefits Scheme Safety Net

Please note that the PBS Safety Net is a little more complex than the MBS. The thresholds for 2022 are $1,542.10 for General patients and $326.40 for Concessional patients. Note that if you have private scripts, these do not count towards the threshold. Private scripts are those where the patient doesn’t qualify for the Government Subsidy, but is still able to be prescribed the medication – this could, for example, be for “off-label” use. That link also has good “The Real Cost of Medicines” examples illustrating how it works.

The scheme requires pharmacists, on request by patients, to record the supply of PBS and RPBS items on prescription record forms. When a patient reaches the Safety Net threshold within a calendar year, they qualify to receive PBS or RPBS items at a cheaper price or free of charge for the rest of that year. Any applicable special patient contributions, brand premiums or therapeutic group premiums must still be met by the patient.

The Safety Net threshold is reached by accumulating eligible patient contributions for PBS prescriptions supplied through community pharmacies and private hospitals and for out-patient medication supplied by public hospitals.

Pharmaceutical benefits (including authority items) can only be counted towards the Safety Net threshold when prescribed and supplied according to PBS conditions. A medicine supplied by a pharmacist not approved to supply pharmaceutical benefits cannot count towards the Safety Net.

https://www.pbs.gov.au/info/healthpro/explanatory-notes/section1/Section_1_5_Explanatory_Notes

I strongly recommend if you or a family member has high medication costs, you ensure you are availing yourself of the benefits.

Summary

The confusion I have noticed among members of the general public is I suspect partly due to the transition from the tax deduction days. I don’t remember how well the “new system” was publicised at the time.

I recommend couples and families ensure they are registered because if someone suddenly does become unwell, the last thing anyone thinks of AT THAT TIME is registering with Medicare. With the risk of Long Covid currently, best to be prepared.

If you do have high pharmaceutical costs, please check with a pharmacist. I never hit the PBS Safety Net so I do not know nearly as much about how it works.

I Sat in My Car and I Cried

2021 was not a good year for me health-wise and it is time to come clean. In our chronic illness life, things don’t always go according to plan. Before I get into the details, I want to make VERY clear I do not in any way regret participating in the clinical trial I was on. It was wonderful, the people were wonderful, I was very well cared for. I am no longer on the trial, as you shall read, but that doesn’t mean the medication isn’t a great medication. I was just unfortunate. It happens. Hopefully I will have contributed to scientific knowledge in some small way.

So let’s get into it.

For whatever reason, during 2021 my medication stopped working for me. This could have been due to a variety of different reasons, we will never be able to prove the reason specifically for me so I am not going to discuss the various possibilities. It is not unknown: medications can just stop working for particular people. Of course, so much happened in my life DURING 2021, we did have a tendency to think I was flaring because of “stuff” happening. To just do a quick recap:

  • February: I suffered a fall, injured left ankle, right wrist (but saved my knee!!)
  • March: First Covid-19 vaccine (can cause flares in people like me)
  • April: Preparing for foot surgery (training work replacement etc, super busy)
  • May: Bi-lateral foot surgery followed by six weeks of inactivity
  • June: Second Covid-19 vaccine (can cause flares in people like me), plus I resigned from my old job
  • July: Started new job

So basically, lots of quite stressful events. That’s without considering the lockdowns which resulted in a lack of access to the gym and swimming and the various other concerns we all dealt with in 2021.

I did not want to accept that my medication wasn’t working (and that’s on me, it was my decision to persevere longer than I should have), for it had been wonderful. Best part was I did not suffer any side effects. However, at the end of 2021 it got to the point I had to accept the advice. A change of medication was needed. However, by now we were getting towards the holiday season and so appointment scheduling became an issue.

I’m leaving some detail out, but on New Year’s Day I almost took myself to an Emergency Department (ED). I didn’t for two reasons: A) If I went to my closest public hospital, I risked Covid-19 exposure, B) If I went to my local private hospital the ED fee would be money I really did not want to spend and I knew that in reality they’d likely manage the pain and tell me to call my rheumatologist on Tuesday. I could do that myself. So I soldiered on.

By January 4 it would have been easier to tell you what didn’t hurt, rather than what did. Even the entheses of my left hip were painful and THAT was scary as hips were one part of my body that had not previously been involved. What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

That may not be a full list, but you get the picture. In the past, like when my shoulders had misbehaved earlier in 2021 (had ultrasound guided steroid shots in both shoulders), at least I could still walk, so I could still exercise, still move. Movement is not only my physical condition management strategy, it is also beneficial for my psychological health. Suddenly my lower body was so sore I couldn’t walk more than 500 metres. I couldn’t do upper body at the gym because my wrists wouldn’t allow me to lift dumbbells. I was struggling both physically and emotionally/psychologically.

I struggled to use a petrol pump. I couldn’t hold a coffee mug in one hand first thing in the morning. Turning taps off and on was painful. Getting dressed was a struggle. I needed a walking stick to get out of bed and move first thing in the morning. I could go on.

On January 9 I took myself to the hydrotherapy pool. It was a struggle to get into my bathers as my hands, wrists and shoulders were hurting. But I managed. Packed my hydrotherapy gear. Drove to the swim centre.

It was closed for repairs.

I walked back out to my car, sat in my car and cried. It seemed there was NOTHING I could do, not even hydrotherapy.

Of course, I’d been in touch with my medical team and January 11 I was officially taken off the old medication. I also took the rest of the week off work. Taking the rest of the week off work filled me with guilt. I love my job and when I’d accepted the offer I believed my psoriatic arthritis was under control. I didn’t feel fantastic at the time, BUT I was still only seven weeks post the foot surgery, so at the time it was thought the body seeing surgery as an injury was the cause of my flare state and I’d go back to my normal. So I was horrified to be taking time off.

I mention this for newbies to the chronic life and friends, family or colleagues trying to understand and be supportive. We, the patient, can feel guilty about stuff we have absolutely no control over. I can’t predict the future, yet I felt responsible for the fact I couldn’t have predicted the future! So then not only do we feel unwell, we feel guilty on top of it. Not a good place to be.

Bottom line, I’m on a new medication. This is my sixth medication since the start of 2015. So six medications in seven years. Many medications for many conditions, including mine, do not work overnight. Some take six to twelve weeks to “kick in”. In the meantime the patient takes a bridging medication to hopefully control symptoms at a manageable level, such as in my case Prednisolone. We taper OFF the Prednisolone as the new medication (hopefully) ramps up. I’d just ALMOST tapered off my last Prednisolone series, now I’m back on. So the patient doesn’t necessarily know for several weeks if the new medication is going to work for them. Will there be side effects? How much weight will be gained on the Prednisolone?

It can be natural for people to think along the lines of, “Well, OK, you are on a medication now, shouldn’t you be feeling better?”. No, it can take a while.

Many of these conditions are resolutely unpredictable, and THAT alone can be hard for friends, family and colleagues to understand. I get that – it is hard for ME as the patient to understand. I’m sure it is hard for the medical professionals to manage too. No crystal balls in this business. I wish there were. My rheumatologist painted me this lovely future scientific state where we will be able to personalise treatments, but we are not there yet – and probably won’t be in my lifetime. I also suspect such treatments may be rather expensive, but that is a WHOLE other discussion!

Today I actually managed to walk two walks totalling just over two kilometres. My left ankle is complaining a bit, but my right is OK. It is the furthest I’ve walked for weeks. I was back at work today. I’m on the improve.

All I can hope is the improvements continue. Pace UP again almost from scratch, don’t overdo stuff.

So if you or someone you know is struggling through a setback – please know you are not alone. It sucks. All I can say is keep persevering.

In closing, I would like to thank my manager and colleagues for their wonderful support. I am so grateful.

Hope for the Best, Plan for the Rest

While the Covid-19 variant Omicron may be clinically “mild” for many people (and the jury is still out on that), for some of the population it may not be. Many of us with chronic conditions may have conditions that make catching Covid-19, any variant, a riskier proposition for us. Talk to your general practitioner about your condition/(s) and your risks.

While Covid-19 is not the only driver for any of us to consider our legal documentation – it is particularly pertinent at this time and has certainly prompted me to get my affairs in order.

I am not a lawyer or a doctor: I am a rather experienced chronic illness patient. I am conversant with my risk profile. On that basis the last thing I want to do is leave my family with a medico/legal battle should I end up in difficulty. I want to make things as easy as I possibly can for those left to finalise my affairs.

While we don’t like to think of such things it is important to consider and prepare legal documents ahead of time. The links I am providing in this article relate to Victoria, Australia, however you will find similar in your location.

The details in this article are neither exhaustive nor comprehensive. This aim of this article is to list the documents that it may be appropriate to consider and information links.

Advanced Care Plan/Directive

This you organise with your doctor although lawyers will draft a document for you. Details can be found at advancecareplanning.org.au. Note there are differences between states. This is a document wherein you can detail your wishes about treatment under a range of possible medical or surgical situations.

Appointment of a Medical Decision Maker

Details of appointing a Medical Decision Maker can be found on the website of the Office of the Public Advocate. This can be in place of a Medical Power of Attorney.

You have the right to make your own medical treatment decisions.

However, if you experience an injury or illness that means you are unable to make decisions, either temporarily or permanently, If this happens to you, Victoria’s Medical Treatment Planning and Decisions Act 2016 specifies who has legal authority to make medical treatment decisions for you. This person is called your medical treatment decision maker.

You can choose your medical treatment decision maker by appointing someone to this role, providing you have decision-making capacity to do so.

https://www.publicadvocate.vic.gov.au/your-rights/your-healthcare/appointing-a-medical-treatment-decision-maker

Enduring Powers of Attorney for Financial, Medical Treatment & Personal Decisions

Details about Enduring Powers of Attorney can also be found on the Office of the Public Advocate.

These ensure that someone you trust can make decisions for you if and when you are unable to make decisions. Given the current studies around cognitive deficits and brain damage in Covid-19 patients, death is not the only concern.

Cognitive deficits in people who have recovered from COVID-19 is an article published by The Lancet.

The Mayo Clinic advises:

Although COVID-19 is seen as a disease that primarily affects the lungs, it can also damage many other organs, including the heart, kidneys and the brain. Organ damage may lead to health complications that linger after COVID-19 illness. 

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

Voluntary Assisted Dying (Victoria)

Under current legislation in Victoria your appointed medical decision maker cannot request VAD on your behalf. The Victorian Government has a website detailing the legislation, Voluntary Assisted Dying. Note that this CANNOT be prepared in advance of any requirement. The criteria are very strict under the current legislation. I include it here only to highlight this is not something that can be prepared in advance, nor can you instruct your medical decision maker to request it, as that is not permitted.

Only you can start a discussion with your doctor or health practitioner about voluntary assisted dying. Your doctor or health practitioner cannot start the discussion. Your family member or friend can be with you when you ask about voluntary assisted dying, but they cannot ask for you. This helps to make sure your decision to seek voluntary assisted dying is voluntary.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

Last Will & Testament

There are many available links. I have chosen the Australian Seniors Understanding a Last Will & Testament in Layman’s Terms as a the resource I am providing.

As many people remarry, please note the following:

Marrying (or remarrying) automatically cancels your Will, unless your Will clearly shows you were planning this marriage when you made it.

https://www.legalaid.vic.gov.au/find-legal-answers/wills-and-estates/changing-will

I mention that specifically because I had that exact discussion with friends of mine recently who actually couldn’t remember when they had made their last wills. Dying intestate is not a financially sensible option as there are fees for the state to administer the estate.

If someone dies without a will, they die intestate. Being intestate means that the laws of the state or territory they live in will decide how their estate is administered. An estate is made up of a person’s assets and liabilities.

https://www.statetrustees.com.au/executor-services/learn-more-about-executor-services/what-happens-if-someone-dies-without-a-will?gclid=Cj0KCQiA5aWOBhDMARIsAIXLlkcSG2I6utkyILW0VXnAdvm9SddjCIGePIRVIdnyUOT8-ltbXsxSJdQaArewEALw_wcB

Superannuation & Life Insurance

Superannuation and life insurance do not automatically form part of your estate. Superannuation particularly often requires a Binding Nomination form be submitted to the superannuation company and updated every three years (annoyingly).

I strongly suggest your check your specific situation with your life insurance and superannuation companies. The following is the HESTA website as an example.

It’s not the happiest subject – but it’s super important…who will get your super when you die? To be more certain it will go to the people you want, you can sign a binding death benefit nomination.

https://www.hesta.com.au/members/your-superannuation/accessing-your-super/binding-death-benefit-nominations

Take care, stay safe.

Edited to add: Since I wrote this article in December 2021, Four Corners have done a feature:

Some 50,000 Australians are currently under the control of Public Guardian and Trustee agencies around the country.

By law, these ‘clients’ are banned from speaking out about what happens to them, and journalists can be fined or jailed for reporting on them.

https://www.abc.net.au/4corners/state-control:-australians-trapped,-stripped-of/13795520

Although I alluded to this issue in the article above, I didn’t go into detail. If you have not seen this episode, I highly recommend you watch it.