Be Careful Who You Believe!

I had a very concerning conversation on social media across yesterday and today. I made a post (see below) and the reply poster (I’ll call him RP from here on) told me my exercise regime was wrong, according to his doctor. Not only that, what he told me to do was COMPLETELY incorrect for my situation. What concerns me is people new to chronic illness life may be persuaded by him to follow his advice which may be COMPLETELY contraindicated for those people. Everyone is different!

To put some context around the conversation that took place, on December 29 I had an infected cyst removed from my back by a plastic surgeon. Because it was infected I was given strict instructions NOT to get the dressing wet or to sweat. It is not a waterproof dressing, due to the fact the cyst was infected. We are in Australia, in summer: we can sweat walking to our letterbox. So I have had to take that into consideration in the last couple of weeks.

Secondly, I am clinically heat intolerant. In the past I have ended up in the Emergency Department due to my heat intolerance. I prefer to avoid that.

To top it off, we have been in the middle of a heat wave. Looking at the RP’s social media profile, I think he may not be used to temperatures around the 40o Celsius mark. Trust me, not the sort of temperatures it is safe for me to be out and about in.

Most of my followers were aware of all the above when I made the following post, so I didn’t go into specific detail.

YAY! After the heat inhiiting my working, II finally got my daily goal again! Next 2 days will be OK, then we are back in the 30+ range again. (includes two pics from Garmin

The reply I received?

“Walking? That’s more of a stroll! Let’s start with 5 km a day!”

He had not, I think, clicked into the actual image (full image above title) to see I had in fact walked 4.1 km in total.

My reply:

've got a better suggestion. How about you educate yourself about managing chronic illnesses, heat intolerance, biologic medications and a few other things. I do quite often walk 6 km a day, but NEVER in one hit and CERTAINLY NOT inn 30 degree temperatures. (Included link to my About page)

At that point I thought that would be the end of the discussion. But no! This morning I woke up to a stern lecture.

RP’s reply to me:

“I don’t have to, my doctor has recommended that I go for regular walks for various health reasons. And he didn’t mean 10 minutes around the corner, but 30-60 minutes a day! So I can only recommend that you educate yourself!”

He then added, “BTW: At every weather!”

I have redacted his ID in the image below.

Image of text quoted above.

I am actually qualified to give exercise advice, which he would have discovered if he had bothered to actually look at my About page.

I replied:

No, RP, you are not correct is assuming what is recommended for YOU is suitable for ALL patients. If you do that, you risk causing someone damage.

l am qualified, thank you very much, to give the advice I give. You are not. So please pay attention and learn some things you clearly do not know.

I do exercise for a hour a day, just not all in one hit, which would lead to the Boom/Bust cycle, something you clearly know nothing about.

Again, I am qualified in this field. You are not. I also have 10 years lived experience. Into my 11th year now. It is not safe for you to give incorrect advice to other patients based on something your doctor told you for your medical situation. Please do not do that!

So his doctor has recommended he walk for 30 to 60 minutes a day. Great. FOR HIM! He clearly knows nothing about the Boom/Bust Cycle, Pacing, chronic pain management and a host of other things. But he sees fit to tell me, in my 11th years of managing my chronic illnesses and qualified in exercise and having attended a chronic pain management program, that his doctor’s advice applies to ME? Furthermore, he tells me to educate myself?

Importantly, not many doctors are also qualified exercise practitioners. That is why we have Exercise Physiologists, Physiotherapists, Fitness Coaches and Personal Trainers. Exercise Physiology is a four year degree: not many doctors will have added that onto their already lengthy medical degree and training.

Of course, in attacking me, he chose the wrong person. I know what I am doing. My medical specialists are in total agreement with me. I was qualified to hit back.

What worries me is people new to chronic illness life, or their family or friends, may believe this random uneducated person on the internet and do themselves some serious damage in the process. Always make sure you receive advice from QUALIFIED practitioners who ALSO know YOUR specific medical situation. RP’s doctor knows NOTHING about me, but RP thinks his advice somehow magically applies to me. I wouldn’t give RP advice unless I had done a complete assessment consultation and he had medical clearance in writing.

Reference Articles (some are already linked above):

Beat the Boom/Bust Cycle
Pacing for Beginners
Pacing THRU, Pacing UP, Pacing DOWN
Let’s Revisit Pacing
Exercising in Summer When You Are Heat Sensitive

Robyn Dunphy4 Comments

We Are Not All The Same

This article is for family, friends and colleagues of chronic illness patients. Maybe even for some of the newer patients among us as well – it takes a while to learn the ropes.

Many diseases/conditions are very different from one person to another. If you have a family member with rheumatoid arthritis, for example, and you meet a new co-worker with rheumatoid arthritis, they may have very different symptoms and daily life challenges. Just because one patient can walk and weight lift does not mean another can. Another patient may be using a walker. Same disease, different outcomes.

This can be for any number of reasons, depending on the disease, but here are few possibilities:

  • How long have each of the patients had the disease?
  • How far had the disease progressed before the patient was diagnosed?
  • How effective are their medications for THEM?
  • Have they been able to persist with physical therapy, if appropriate for the disease?
  • Does one patient have multiple conditions and the other only one condition?
  • If one works and the other doesn’t, the working patient may struggle to find energy to care for themselves.

The number of times I’ve heard people say to patients something along the lines of, “My aunt has xyz disease just like you and she can do way more than you can. Have you tried abc (insert any popular supplement here) supplement?”

Although I still do a few casual hours, I retired (see article linked above) in 2022 because working, even reduced hours, just left me absolutely wrecked at the end of the day. I had no energy left to look after ME!

Many of these diseases are progressive – that is, they do more damage the longer we have the disease. Many medications can slow or even stop the progression, but not necessarily for all people. We don’t all have the same outcomes from the same medications. For most of the diseases I am considering in this article, the medications don’t undo existing damage, so if we are diagnosed later than optimal, we may be stuck with the damage already done up to that point.

If patients have more than one condition (and SO many of us do) those conditions can interact. For example, back in 2014 when I first began treatment, my rheumatologist would not treat me for his specialty until the endocrinologist got my thyroid under control.

Some patients may have more than one condition that results in fatigue, so they may be “doubly” fatigued.

I’ve written before about Invisible Illness. Just because one patient doesn’t look sick (in your view) doesn’t mean they aren’t. I don’t look sick, most of the time, but another patient with exactly the same clinical diagnosis could be using a walker. I have a friend with MS – he still works and drives. I knew another MS patient many years ago who could no longer speak and was in a wheelchair.

Many of us have researched our condition/(s) to the nth degree. We probably have a team of specialists and allied health practitioners looking after us. For example, I have:

  • GP (general practitioner for overseas readers)
  • Rheumatologist
  • Gastroenterologist
  • Ophthalmologist (every two years only)
  • Neurosurgeon (new)
  • Sleep Specialist
  • Cardiologist (although haven’t seen him for years, no need)
  • Dermatologist (also haven’t seen him for years as the meds have the skin covered as well)
  • 2 x Orthopaedic Surgeons (they each do different bits)
  • Physiotherapist
  • Myotherapist
  • Exercise Physiologist

I feel like I’ve forgotten one, but you get the idea.

Yes, we may recommend practitioners to each other if another patient asks.

All I ask is that people not expect us to be the same as anyone else they know with the same condition/disease. We pretty much won’t be. Of course, given the global population and the number of people with chronic illnesses, there will be some that are very similar in presentation. Read Will Society Adapt? When? How? for some numbers. It is quite shocking, really.

Each of us will be different. Please don’t make assumptions.

Robyn Dunphy1 Comment
leg press

Are Strong Pain Meds and Exercise a Good Combination?

Rule number 1 – discuss your specific situation with your doctor if in any doubt. Having said that, my experience is no, usually not a good combination.

Now, obviously I am not talking about trying to lift weights on pain meds after surgery! Just listen to your rehab physiotherapist!

What I am talking about is when patients are in situations like mine. We have a chronic illness, in my case psoriatic arthritis, and one of several things happen (or more than one happen together).

The most obvious examples are:

  • The condition flares
  • The primary treatment medication stops working for the patient
  • The patient is waiting for a new medication to start working.

At times like this the patient may have no option but to resort to a stronger pain medication than Panadol Osteo or similar.

Side note! If you are a friend, family member or colleague of a patient reading this, please be aware changing medications is not a simple thing with many of these diseases. A new medication can take anywhere from two weeks to six months to reach full effectiveness, with hopefully incremental improvements along the way. The medications are also NOT a cure. Not all medications work for all patients: I’m a prime example, my newest medication is medication number 11 in the 10 years I’ve been managing my disease. Medical science may develop cures in time, but we are not there yet.

My usual routine is I lift weights, walk and swim. If I am on strong pain meds, I do not lift weights. If the shoulders are involved, I do not swim either.

In order to exercise safely you need to be able to listen to your body. Perfectly healthy people lifting weights need to listen to their body: it is even more important for those of us with an illness we are managing to be able to listen to our bodies. Some time ago I wrote Changing Your Exercises for Safety where I looked at some adjustments we can make to exercise safely. I didn’t discuss pain medications as back then I really wasn’t using any of the “big stuff”. In 2023 I wrote about changing medications and what you can expect – it isn’t always easy!

If I am on strong pain meds, I can’t read my body as well as I need to be able to, to protect myself from inadvertently injuring myself or making my situation worse. I can’t necessarily tell if I should drop (reduce) the weight I’m lifting because it is possible the pain meds are blocking any discomfort I am causing myself.

Yes, not going to the gym may cause other issues. At the moment my lower back is a bit grumpy because I have been not willing to risk doing the extensive range of posterior chain exercises I usually do which keep my back in a pain-free state. But I’ve been on pain meds, off and on, for much of this year. I’ve just started my third treatment medication for this year and have been able to stop the strong meds.

I returned to the gym yesterday. I was VERY careful. Lifted very low (for me) weights to see how my body responded. No trying to do 160 kg on the leg press, I assure you. I did 45 kg. So embarrassing. I found the leg extension a real challenge, so was very careful. Despite how much walking I do, clearly my quads have taken a little holiday.

The quads are a good muscle to compare with others from yesterday. They seemed so weak that I don’t think I’d have physically been able to do myself any damage even if I was on pain meds – the strength just wasn’t there. However, the chest press was a different story: I had the strength to lift more than I did, but doing so hurt my shoulders and I could feel that, so dropped the weight back. On pain meds I probably would not have been able to feel that warning. I may have overly stressed my shoulders which are in recovery mode at the moment. I will say my shoulders feel better today than they have for months. I had steroid injections in them a few months ago – they were bad. But I need to go slow and steady to build up my strength again. And give the new medication a chance to work.

Why have I not been swimming? Same thing: reading my body. On strong pain meds I would not be able to tell if I was aggravating my shoulders or not. I will try swimming this week and see how the shoulders react, but I will be very careful.

Each disease is different. Each patient is different: patients will be on different pain meds and even if on the same pain med they may be on different doses or strengths. This isn’t a one size fits all situation.

If I know beyond doubt it is only my upper body flaring, for example, I’ll still do lower body exercises and vice versa. But it takes experience to be able to determine these things. I’ve clocked up 10 years this year and every year brings something different to learn as a patient.

Movement IS Medicine – but we need to be very careful when our disease is running riot and we are having to resort to strong pain medication.

Robyn Dunphy1 Comment

It Is Like Two Days In One

I’ve had a weird day. Even for someone who has had this disease for ten years, this is a weird day. I’m writing about it for three different audiences:

  • Medical professionals, because this is the stuff we never get to cover in an appointment with you
  • Friends, family and colleagues of chronic illness patients, to provide some insight into what your friend, family member or colleague may be going through
  • Other chronic illness patients – sometimes we can feel as if we are the only one having particular experiences.

The overall situation I describe here is not unique to psoriatic arthritis, but some aspects will be. As that is the disease I have, that’s what I am writing about.

Let’s get into it. This morning I woke up at 6:15 am feeling like a broken doll. I had sore fingers, sore wrists, sore upper arms and a sore neck. Thankfully, my lower body seemed perfectly fine. There was also a very blah feeling. Malaise? Not sure I was quite at the malaise stage, but I certainly didn’t feel like singing and dancing.

By about 10 am I thought to myself, “Oh, I think it is starting to lift!” Tossed up whether to shower or have a coffee, decided om the coffee first. By 12:36 pm I was actually showered, dressed and had lipstick on (I mean, really, did you doubt the lippy?). Yes, the above photo is me, today, AFTER I felt human.

I remember thinking to myself as I drove to the gym at 1 pm, “This is like two completely different days in one.”

At that point I felt like I could climb Mt Everest. OK, not quite, but the difference was SO stark. Unusually so. This slow, crappy start to days is not unusual, but often the bad is not so bad and/or the good is not such a massive improvement as what happened today. I really felt like a completely different person, physically.

I think there is a tendency for the general population to understand that mental health conditions may fluctuate, but tend to perhaps think of physical conditions as being more consistent in presentation – not totally consistent, of course, but shall we say mostly more consistent. Some are, I agree. Some are not.

I had steroid injections in my shoulders on Thursday so had deferred going to the gym out of an abundance of caution. I really wanted to go today, but waited to see what my body decided to do. My favourite gym leggings helped, of course.

Ultimately, I had a good workout.

  • 1 km on the treadmill as warm-up
  • Leg press
  • Chest press (left shoulder clickity clicking on this)
  • Leg extensions
  • Seated row
  • Vertical knee lifts
  • Triceps
  • Leg curls
  • Back extensions
  • Lat pull-downs

The free weights area was a little overpopulated so I skipped biceps and shoulder press – they can wait for next visit.

As I write, it is 4 pm. I’m pretty much a “healthy” person.

This was a GOOD day, in that I came good as the day wore on. Sometimes we are not so lucky. OR we may wake up already feeling ready to take on Mt Everest. The issue is, we never know until we open our eyes in the morning. One morning recently I woke up unable to bend my left knee. Another day (some time ago) I was driving when I suddenly realised I couldn’t turn my head to the right (to check for traffic). On both occasions the rest of me felt fine!

This unpredictability makes planning life difficult. In time, my new medication hopefully will make everything more stable: it is still early days. But for many of us, today (or variations thereof) is what we live with. It can be hard for those around us to understand, especially when we do not LOOK sick. The invisible illness scenario.

The recent shoulder issue is a classic example of that. I LOOK fine. But reaching forward to put stuff in the microwave, or turn on a power switch, or turn on a tap were problematic. Lifting my arms about chest height, or anything involving internal rotation. Getting dressed was super challenging. Let’s not even discuss bras! But I LOOKED fine.

I can generally go with the flow because I’m retired. I’m not trying to get kids ready for school or meet a work deadline. I’m not trying to cook for a family of six. I really feel for those patients who have these types of responsibilities.

To my fellow patients – you are not alone. There are many of us out in the world facing similar challenges.

To everyone else – just because you can’t see something, doesn’t mean it isn’t there. You aren’t living the daily, sometimes even hourly, challenges. Support your family member, colleague, friend or patient.

Me? Hey, I just hope tomorrow is as good!

Robyn DunphyLeave a comment

Feel Like I’m in a Holding Pattern

It goes like this. On April 6, 2024 I started my NINTH psoriatic arthritis medication. Sequential, not together! Some medications have a loading dose period: this is one of them. So for four weeks I have injections once a week. Then I move to monthly injections. The first monthly injections are the week after the last loading dose injections, so effectively the patients have weekly injections for five weeks in a row.

You’ll notice I said injectionS – no, that is not a typo. The dose is not available in Australia in one pen, so I have to use two pens. This is not a problem for me as I find the pens really easy to use.

A previous biologic I was on was fine during the loading phase, then when I got to the normal doses, in that case an injection every eight weeks, I found it wasn’t as effective. I’d be great for about three weeks, then steadily feel worse for the next five weeks. Not a great situation to be in.

So, while I feel very good right now, I am waiting until June/July to see if this medication will be effective for the full four weeks between injections. Of course I am hopeful! But that is why I feel like I am in a holding pattern. There are things I want to do, get involved in, but I feel I can’t yet commit to anything that involves other people until I know how this treatment is going to pan out longer term.

At least I’m not taking any NSAIDs or prednisolone and I’ve taken Panadol Osteo about three times a week. YAY me! Or YAY the new medication. Because I’m not taking those additional medications (and I’m moving), I’m also managing to shed the weight gain that occurred while I was taking them. Thank you, 2023. Not my favourite year, let me tell you.

Another aspect of being chronically ill that is driving me nuts at the moment is the amount of effort required to remain, well, functional. So much planning goes into ensuring I get the movement required, balancing with the rest required. Then of course I’ve just had nine months of rehab exercises from first the knee replacement surgery then the ankle surgery. Not to mention the cast and the knee scooter and the moon boot! At the moment I’m kind of on the come back trail: the last four weeks have been good, let’s keep going. My first walk after the ankle surgery was February 14, a whole 0.8 of a kilometre. Now is much better.

I drop my target step count on the days I lift weights, which is every third day. Some days the weather may impact my step count! This is Melbourne, after all: we can have sunshine one minute and a howling storm five minutes later.

Garmin walking record for a month
Garmin weight lifting/resistance training record for a month.

Reconditioning one’s body after nine weeks essentially immobile when that body is already challenged by psoriatic arthritis (and, umm, advancing years) requires a bit more planning that usual. Yesterday was a classic case. I did not make my 7,500 steps. I needed another kilometre, but for whatever reason/(s) a few things were grumpy by the end of the day. I opened my front door. Stood there for about 30 seconds and decided (sensibly) this was not happening. Closed the door and came back inside!

My lower back did play up off and on once I got moving again. Being “misaligned” for nine weeks on the knee scooter then the moon boot was not something my back muscles and left glutes liked AT ALL, I discovered. Lots of heat packs and stretches involved and all is now back to normal.

In summary, some days I end up feeling as if all I do with my life is work at keeping this disease under control. In the early years, I was still working, I had a purpose to keeping it under control. Now there are days when I wonder why on earth am I putting in all this hard work? Which is why I need to be DOING something other than just “keep active”. I need to have something to DO. Which explains the holding pattern dilemma. Thank goodness for my psychologist allowing me to vent!

I’ll get there! It is just a frustrating time and we all have them.

I’m still happy to be past the tip of the bell curve (top photo) for my daily step count given my situation. And remember, that is only Garmin wearers, many of whom will be very active, not the whole population!

By the way, I’m freaked out by the number of people that are freaked out about patients injecting ourselves! Many diabetics have been doing it for years! I’m not sure why we (i.e. those with other conditions) are seen any differently.

Robyn Dunphy1 Comment

Are You In The Running For A Gold Medal?

No, I don’t have one, at least not yet. What IS she on about, I see you wondering. Let me recap. Back in May 2023 I wrote about Crossing My Fingers – Again. As it turns out, I was counting my chickens before they hatched. I saw my rheumatologist a week before my (latest, second) knee surgery and the decision was made no, the medication I was on was not working. HOWEVER, because my knee surgery was looming, I couldn’t start the next, the eighth medication, until ten days after my surgery due to infection risks, it being an immunosuppressant. This new medication can take twelve weeks, roughly three months to work – or more. Here we go again, I thought.

I started the new med in the second week of August. About three weeks ago I mentioned to my GP that if anyone were to ask, I would say the new medication was working about 50%. I qualified that statement by saying, “But the question is really, 50% of what? 50% of the maximum efficacy of the medication, or 50% of what I expect?” Hey, I’m an accountant – percentages make sense to me!

At my rheumatologist appointment this week, I relayed that conversation to him. I then added, for example, what percentage of normal can I expect to feel? 100% normal? 80%? Do we have a ballpark number? He sat back in his chair and said that was a very interesting question, he’d never heard it expressed like that. He told me, “We always aim for 100%, but don’t always make it”.

It is interesting to note that in cited clinical trials, on my new medication at the one year mark 68% of patients in the trial experienced “less joint pain and swelling”. Only 68% of patients? Only “less”, not “it had all gone away”? I’m not linking to the study results as I don’t name the medications I take simply because what doesn’t work for me might work perfectly well for other people and I don’t want to make any other patients hesitant to try medications. After all, we already know from my pharmacogenomics testing (click the link for great information) I have metabolisation issues with many medications (some too fast, some not at all, etc) – best not to use my personal experiences as an example of the efficacy of anything!

I actually don’t expect to achieve 100% of normal. My disease, psoriatic arthritis (PsA), like a lot of other chronic diseases, is A) not (yet) curable, and B) progressive. My patient understanding is that we hope to slow progression, not necessarily be able to stop it completely.

My rheumatologist (let’s call him Dr R) suggested I think about it like the Olympics – not everyone gets a gold medal, some people get silver. At the time, this sounded reasonable.

As I was walking the next day and thinking, always dangerous, I thought to myself, “Hang on a minute, in every race someone comes last!” And all the positions in between. Yes, every person who stands at the starting line hopes to get a gold medal, I know this, but only one does. I’m not sure this is the best analogy for Dr R to use. In fairness to Dr R, I think he came up with the Olympics on the fly, knowing my exercise strategy and thinking it fitted with the patient in question (me).

The initial three months have passed and yes, in the last two weeks I have started to feel much better. I have more energy, I found myself singing to the radio in the car (always a good sign) and my strength is slowly returning. At one stage I couldn’t lift my four litre saucepan if it was full, let alone do a six kilogram bicep curl. This was not just about strength – my hands and wrists were really sore if subjected to any load (saucepans or dumbbells), so although the biceps were quite happy, the wrists were not – we now have some improvement. I was waking every morning with my hands in a lot of pain and had difficulty bending my fingers (a complete reversal from when one hand had to be splinted to stop it locking into a fist). My hands are still a bit “grumpy” in the mornings, but at least they are usable!

The above photo was taken on October 22 – I wanted to wear an old bangle on a night out. As you can see, that wasn’t happening. My hands are still too swollen and the joint at the base of the thumb is bigger than it was in my pre-PsA days. So while I feel better overall than I did three months ago, am I “normal”? No. I think I might be at about 70% of normal taking into account my age which brings it’s own issues, irrespective of my PsA!

How could I measure it? Good question, I’m not sure. If I took the leg press as one measure, I am currently only doing 65 kg because I’m coming back from total knee replacement. My personal best since I was diagnosed is 160 kg. 65 is 40% of 160. But using that as a measure would be being unfair to the medication, as I am restricted in how much I can lift at the moment, being post-operative. I feel if it wasn’t for needing to be careful of my new knee, I could lift much more.

I’m not taking any pain medication other than Panadol Osteo, that’s a good measure, but I am supplementing with a low dose of NSAID as needed. I’m certainly doing more Movement As Medicine than I was before starting this medication: that is a very good sign. I’m writing (today at least).

Will I get the gold medal? I’m very wary of that as an analogy for treatment “success”. Too few people get gold medals in the sporting arena. How many of us come last? I know Dr R’s heart was in the right place, but I think expectations is something we perhaps need to look at more closely. What is a realistic expectation of improvement on any particular medication? Or, for that matter, with any particular condition?

As I stated above, this is my eighth medication since I was originally diagnosed in 2014 (with rheumatoid arthritis, later rediagnosed). That’s not counting the ever-present “extras” like NSAIDs and corticosteroids. But where am I in the race?

I think I know the answer: we don’t know! Personalised medicine is a rapidly developing field, but doesn’t cover everything yet. So I’ll keep running this race and hope I don’t end up last. Meanwhile, I’ll try to think of a better analogy. Maybe trying to hit sales targets? Not really my scene, but at least we’d stand an equal chance!

19/11/2023 Edited to clarify: by the phrase “So I’ll keep running this race and hope I don’t end up last” I mean I’m staying on this medication and hope improvements continue in the coming months. It occurred to me overnight that I may not have been very clear! My inflammatory markers were very nicely reduced too, which was good.

Related: Changing Medications – What Can You Expect?

Robyn DunphyLeave a comment

Rattle Ya Bones Day!

Rattle Ya Bones Day is coming! What is Rattle Ya Bones Day, you ask? I’m so glad you asked, because that’s what I want to tell you about!

Rattle Ya Bones Day is a National Day of Awareness for all muscle, bone and joint conditions. It’s held every year on October 31.

Let’s look at some statistics around musculoskeletal conditions.

  • 1 in 3 people have one or more musculoskeletal conditions (That’s about 7 million of us, give or take)
  • Musculoskeletal conditions aren’t just conditions of old age. Babies, children, and young adults are affected as well
  • 93% of people told us that their lives were negatively impacted by their condition
  • 58% of people are of prime working age (25-64)
  • Musculoskeletal conditions are the most common cause of early retirement (yes, that includes me!)
  • Musculoskeletal conditions cost the economy $55 billion each year.

Given 1 in 3 people have one or more musculoskeletal conditions it is highly likely even if YOU do not, a member of your family, a friend or co-worker has a musculoskeletal condition. Regular readers know I do: psoriatic arthritis. I also have a bit of osteoarthritis and minor scoliosis of the spine. Rattle Ya Bones Day is very relevant to me!

Remember, quite often our conditions are invisible: I’ve written about that particular challenge before, in “We Don’t All Look Sick! Invisible Illness“. This is a photo of me I used in that article – I don’t (I hope) LOOK sick, but yes, I am.

Me! Looking not sick, I hope!

This year’s message is “Get informed and Get supported”.

Learn more about conditions like arthritis, back pain and others, to help you and those you love live well.

On the evening of October 31, MSK will present the Koadlow Community Lecture, Back Up: Why back pain treatments aren’t working and the new science offering hope.

The 2023 Koadlow Community Lecture will be presented by Liam Mannix, a multi-award-winning national science reporter for the The Age and the Sydney Morning Herald. Liam is one of the many who live with back pain, and he takes his own experience as a starting point for his recently published and highly praised book of the same title.

If you are interested, click here to find out more!

Support Musculoskeletal Australia’s work: Please donate today. Your support plays a crucial role in enabling MSK to provide free resources aimed at improving the quality of life for people impacted by muscle, bone, and joint conditions. By donating, you become an agent of change, ensuring that those facing these challenges receive the support and resources they deserve. Together, we can make a lasting impact and create a brighter future for everyone affected by muscle, bone, and joint conditions.

Together, we can raise awareness, share information, and foster a more compassionate and informed society regarding muscle, bone, and joint conditions. Join us on Rattle Ya Bones Day 31 October as we strive to make a positive impact and create a place where everyone has access to the support and resources they need.

Musculoskeletal Australia also has an on-line shop where you can buy items that may make your life or the life of a friend, family member or colleague just that little bit easier. Highly recommend visiting! The kitchen page is particularly useful for me, with dodgy hands.

Need More Information?

Perhaps your organisation may be interested in supporting Musculoskeletal Australia and/or Rattle Ya Bones Day? Your organisation’s support will help create awareness around the wide variety of musculoskeletal conditions and the impact they have on people’s lives. Contact us (that link is to MSK, not me personally 😊) to learn more.

Get informed. Get Supported. Rattle Ya Bones Day

Disclosure: I am a member of the Consumer Advisory Committee of Musculoskeletal Australia.

Robyn DunphyLeave a comment
Picture of two cars squeezed into a single disability parking space

Two Cars in One Disability Car Park?

Today the final report of the royal commission into violence, abuse, neglect and exploitation of people with disability was released. At the end of this article are links to information about the findings.

By sheer coincidence, on Wednesday this week I had an interesting encounter in a disability car space.

I shared the information on X (previously known as Twitter). Some of the responses blew me (and many other people) away. No wonder the royal commission was needed: just at this simple level of disabled life the responses were incredible. Many were very quick to blame me for the black car’s illegal parking!

Let me set the scene. I’d been for a skin scope late in the afternoon. I drove from there to my local shopping centre to collect a prescription from the pharmacy and grab four items from the supermarket (i.e., not a long visit to the shopping centre). I parked my car in the leftmost disability park beside a pillar – that is no-one would be parking to my left. Looking at the picture, you can see the pillar to my left, creating a gap between my park at the next bank of spaces.

Picture of two cars squeezed into a single disability parking space
This does not work!

When I came back from my quick errands, I discovered someone had decided to squeeze in beside me. The yellow line demarking my space can be clearly seen under the left side of the black car’s number plate. There was no way known I could get into my car, even if I’d been a perfectly healthy person back in my thirties!

The car was not displaying a disability parking permit. If the driver did have a disability permit, there is no way the car would be parked as it was. The permit in the window of that car is a residency parking permit – it allows street parking where the car owner lives. The purpose of those permits? An example is a friend of mine lives near a public hospital. The residents in surrounding streets all have these permits, otherwise they’d never get a park near their home.

I called the shopping centre management. They suggested I just wait, the driver would probably only be a few minutes. Probably? What if the driver had gone to dinner at a local restaurant? Gone to the gym upstairs? Centre management agreed to send a security guard. I waited. Several other customers stopped to lend me their emotional support, even though they couldn’t do anything. My plan at that point was to ask the security guard if he could get into my car and back it out for me.

Near the end of this adventure, I was turned away from the cars, watching the escalator to see if I could spot the security guard. I turned back to see the boot of the black car open. The driver then tried to sneak into his car unnoticed! I suspect as he returned to his car, he saw my bread and backpack on my hood and realised he’d stuffed up. Yes, it was a he. Not a young one either, I’d hazard a guess my generation, a tad younger than I am. He was hoping to escape unchallenged.

I’ll admit I was not happy and I did swear.

Me: “How the fuck could you do that?”

Him: “Easy!”

Lovely attitude. As he drove away he screamed at me something about photos, but photos was the only word I heard. I assume he didn’t like that I had taken evidentiary photos of him.

The security guard turned up just after the driver had left. We discussed the incident and I provided all necessary information, including the photos. Drove home and made a police report.

That is not the end of the story though. I posted the saga to X.

So I park in a disabled spot to go to pharmacy & buy bread. I come out to find someone has squeezed in beside me. Like what the actual f***? I can't open my door enough to get myself in my car (knee surgery, PsA, etc) And no, I'm not hiding his numberplate. 😡😡😡
Click image to see the full thread.

Well, all hell broke loose! I was told I should park in the middle. Umpteen times. Let me assure you this doesn’t always work. Different disabled people need different space to enter and exit vehicles. They may have any of a walking stick, crutches, a walker, a wheel chair or even a hoist involved. When I park my car, I don’t know what the next vehicle may need or whether they will park to the left, the right, or in the middle of the adjacent park (to my right). It will depend on their needs. By parking to the left as I have, I am allowing maximum flexibility for the next car and given I am next to a pillar, I am not restricting anyone who may park to my left. I also have the room I need. Well, at least I did when I parked my car. Yes, parking in the middle is standard and necessary in narrow, normal car parks. It doesn’t quite work that way in disability parking spaces.

Different parking spots are marked differently. Here are two disability spots at a local park. As you can see, one is delineated, the other not.

Disability parking at a local park. One delineated, one not

Then the issue of MY disability parking permit came up. Shock, horror, it was hidden by my backpack in the photo. Lots of responses telling me I was at fault as my permit wasn’t where it was supposed to be, according to them. I have NO idea how this excuses the illegal parking by the guy in the black car, but here we are.

According to VicRoads, I was fine. I can assure readers it WAS clearly visible on my dashboard, not just where other people thought it should be.

An Accessible Parking Permit: can only be displayed when the vehicle’s transporting the individual who the permit was issued to must be clearly displayed so that the permit number and expiry date are visible from outside the vehicle.
The Rules!

One reply even asked me what I’d do if all the disability spots were taken, as if to imply I really didn’t need one anyway – now what on earth that had to do with the guy illegally parking is beyond me.

Several seemed to think the only “disability” I had was my recent knee surgery, rather than see I had clearly stated PsA. No, I don’t expect people to know what PsA is – we are a mere 1% of the population – but if you don’t know, perhaps ask – do not assume it is “nothing”.

Many people were supportive, here are two examples:

Supportive replies

Others shared their own experiences.

However, the number of replies that effectively blamed me, the disabled person, for the OTHER person’s illegal parking was astounding! I had to wonder how many of them have snuck into disability car parks when they shouldn’t. Guilty consciences? There are other considerations too. In my case I needed to be home on time to take medication at a specific time. Another person may have been heading to a medical appointment. Being stuck there for any length of time could be really problematic for some people.

Edit 30/09/2023: After publishing this, I had an another thought. There was a lot of emphasis, in the replies to my original thread, on how I should prevent others doing the same thing. Why? Even one of my own friends said it! How has society got to point I (or anyone) can’t just depend on others to DO THE RIGHT THING? Why should we have to be on the defensive ALL the time, to our own detriment (in this case, less space)? Just do the right thing! It isn’t that hard.

Edit 05/10/2023: On the weekend following the above experience, I happened to be in the same car park and took some photos to demonstrate the practicalities we face. The experience that day just happened to be a good example of how parking in the middle doesn’t always work.

In above photo, I have parked in the first disability spot in this part of the car park. as can be seen, there is a pillar on my right (driver’s) side and a delineated clear space to my left. Quite obviously I am NOT parked in the middle of this space: I think it is obvious that had I parked in the middle I would NOT have been able to open my car door fully due to the shopping carts left in the space in front of the pillar. Also, even to open the door as I have, I am clearly NOT within the delineated space. So I moved to another space. Let’s see how that works in practice.

In this space I have parked in the middle. Again there is a pillar on the driver’s side, so a space between my car park and the next one over. However, see where that car (my driver’s side) is parked? Right on the edge of their space. So, if the pillar was not there, I would not have been able to park in the middle – as can be seen, my open door extends over the edge of my car space and would hit that vehicle. Or I could come back to my car and find that space full of shopping carts, like the previous photo. Again, I’d not be able to fully open my car door, therefore would be unable to get into my car. The car parked on my passenger side is parked in the middle of that space, but is a smaller vehicle, may not need to open the door fully, or there may be pillar space on the passenger side of that vehicle and perhaps it is the passenger, not the drive, that needs the space. Every case is different, which is something people forget!

End of edits

No wonder we needed a royal commission! This was, in comparison to some, a very minor issue. The social attitudes it highlighted were shocking.

New Disability Rights Act needed to end abuse and exploitation, royal commission finds – The Guardian

Australia’s Disability Representative Organisations call for healing – Inclusion Australia

Robyn DunphyLeave a comment
Gardiners Creek

Crossing My Fingers – Again

My apologies for my silence over the last six weeks or so. I counted my chickens before they hatched.

On March 12 I published Changing Medications – What Can You Expect?. At that point it was roughly ten weeks since I had changed my medication for psoriatic arthritis (PsA) and I was finally feeling as if the new medication was starting to kick in. I was a little overly optimistic, as it turns out.

Also, although not mentioned in that article, the whole situation became more complicated when I slipped/tripped and fell in the shopping centre car park on March 8. What I initially thought was a simple trip ended up with me back in my orthopaedic surgeon’s office. To cut a long story short, it was decided the time had come to replace my right knee. If you are new to my story, I had the left knee replaced in 2020.

The problem was the slight improvement I’d got overly hopeful about in March did not continue. I was quite quickly back to waking in considerable pain and struggling with malaise and energy levels.

At the time I saw my perioperative physician I was still on 400 mg of Celebrex and 15 mg of Prednisolone a day. In order to undergo surgery on May 10 (the scheduled date) I needed to reduce the Celebrex to zero by May 1 and the Prednisolone to 2.5 mg per day by a week before the surgery. Was this going to be a challenge, I wondered to myself. I certainly didn’t want to just stop the Celebrex cold turkey on May 1 as clearly I was still in need of it to function on a daily basis. I’d needed friends to drive me to a myotherapy appointment and my pre-op Visionaire scans. Essentially, I wasn’t too chipper.

I discovered I had another infected tooth – maybe THAT was the problem? Had that tooth removed. It was a rather complicated event as the tooth was part of a double crown. I spent over an hour in the dentist’s chair, most of that time was spent removing the crown and temporarily recrowning the uninfected tooth. The actual extraction was a minor part of the visit. However, removing the tooth did nothing to improve my overall inflammation.

On April 17 I could see May 1 looming and decided I’d see if reducing the Celebrex was at all possible. Celebrex comes in capsule form – you either take a capsule or you don’t, there’s no pill splitting here! So I dropped from 400 mg to 200 mg on that Monday. Deliberate timing, as I had a GP appointment on the Tuesday. If anything went wrong, I already had an appointment! I also had accepted another kind offer from a friend to drive me to that appointment.

I woke up on the Tuesday in a very unwell state. While I managed to sit up in bed and get my feet to the floor, I could not actually stand up. This was a bit of a worry, to say the least. As gross as this sounds, I’m sharing for transparency: I was very worried about actually getting to the toilet in time. I tried using my walking stick to give myself some leverage, but doing so hurt both my hands and my shoulders due to the angle. Eventually I managed to stand upright and shuffle to the bathroom. While I was on my feet, I shuffled to the front door and unlocked it from the inside – if I had to call an ambulance, at least they could get in. Obviously I was in no position to start reducing my anti-inflammatories!

After various communications between my GP, rheumatologist and knee surgeon, the knee surgery was cancelled for the time being. My CRP and ESR inflammatory markers were rather high and THAT was while I was on all this medication. What would those markers have been reading if I was on no anti-inflammatories?

I did a damn good job on my rehab of my first knee and it is FANTASTIC! I want to be able to achieve the same result with the second knee replacement. At that point in April I was able to walk a mere 800 metres at a time because my ankles were so painful, the left one in particular. I knew that the extra loading of that ankle while recovering from surgery for the right knee could be very problematic. All things considered, cancelling the May 10 date was sensible, but very disappointing. I want the knee done, but there is no point in being a less that optimal patient if that can be avoided.

My next new medication injection was May 4 and I was getting closer to the 24 week mark – SURELY it would start working!

On May 4 (a Thursday) I gave myself the scheduled injection. Nothing much changed until Monday May 8. I did feel an improvement. I managed to walk 1.5 km in one walk. In total I walked 3 km for the day. I have slowly built up during the week and on Friday I walked a total of 4 km over three walks – I’d hit my old goal of 4 km for the day. Saturday I walked 2 km twice. The possibility of post-op rehab is now looking more achievable! I’ve even walked at my favourite walking spot, shown in the picture above.

For those into graphic representation, here are the last 8 weeks. PLEASE NOTE Garmin changes the scale between the two periods, which makes the March/April bars look WAY higher than most of the April/May bars. And of course I haven’t finished today! Look at the total kilometres: 11.2 km versus 58.9 km

HOWEVER – I’m still on those same dosages of anti-inflammatories. I asked the GP about a possible test reduction and she was rather adamant that I give myself two weeks before we try to change anything. I haven’t even mentioned the pain medication I’m also taking or the Voltaren gel I am using on my hands and ankles.

While all this was happening, my rheumatologist scanned me for gout. The CT scan came back negative, which as the rheumatologist said is both a good and a bad thing. While it is good I don’t have gout, we are back to square one. Why is my inflammation so high? Is it merely that the new medication is taking its own sweet time to be effective? Or is my body being difficult?

Speaking of difficult bodies, I also did something rather adventurous. Click the image to go to the website.

While I am not going to go into detail about this test, it has been useful to me. My report was 29 pages long. To give you an indication, this is a summary of my genotype for the genes the test currently looks at.

We have changed two of my medications as a result. We also know to watch out for certain other medications in the future. This test does not yet cover every medication known to science, but it covers a lot. If you are interested, I suggest you speak to your GP about whether it may be useful in your situation. Yes, it is rather costly on a limited income but I see it as an investment in my health, given my situation.

Right now I am nervous that I am again counting my chickens before they hatch. Today is day eight of incremental improvement. I’ve managed to walk 4 km three days in a row, hopefully today as well. I have more energy. I’m writing. I haven’t ventured back to the gym yet, although I desperately want to.

In summary, as I said in my first article on the subject of changing medications, it is often not as simple as opening a different pill bottle. Even as I write, I do not yet know if this medication is going to be effective for me, but at least I have had eight straight days of improvement. I can exercise reasonably well again. This morning I woke with far less pain in my hands! So I’m crossing my fingers. The last blood test results showed a slight improvement in my inflammatory markers.

If you or someone in your life is changing medications, please be gentle. Be understanding. Be aware it may NOT be smooth sailing. 

Robyn Dunphy4 Comments
Medicare, bulk-bill, gap, rebate

Watch for Ambiguous Billing Terminology

I learnt a valuable lesson during the month of March, 2023. Words we think mean one thing, can mean something completely different to other people – I think in general life we are all used to this. When it comes to money, especially money involved in the costs of medical treatment, different interpretations can result in an unexpected and unwelcome hit to the bank balance and the budget.

I share these small examples to encourage ALL patients to double and triple check what their provider actually means when they refer to some of these terms. I also encourage the medical profession to be consistent and use clear terminology, removing all risk of ambiguity.

The terms I am looking at today are:

  • Bulk-bill
  • Out-of-pocket
  • Gap
  • Rebate
  • Non-rebateable

“They do not bulk-bill” does not technically mean the same as “there is no rebate” for a service. Many providers do not bulk-bill, but the patient still gets a rebate. Happens every time I go to my GP. I pay $260.00 and I receive the Medicare rebate of $223.40 overnight into my bank account. Please note that rebate is after having reached the Safety Net Threshold for the year. The fee is also for a long appointment.

The $36.60 is the gap and, to me, my out-of-pocket. A quick unofficial survey on Twitter showed 34% of respondents believe the same as I do. A service that has no rebate and is paid for totally by the patient is, in my simple view of the world, a private service. Like prescriptions for off-label use not being covered by the PBS subsidy – a private prescription.

So, when I was recently told an imaging provider did not bulk-bill, that is what I expected. That is not what happened.

When I arrived I filled out the MRI information and permission forms, including agreeing to $345 “out-of-pocket” expenses. Now, my pain medication befuddled thought process went like this. “That is the standard gap, but they don’t know I’ve hit the threshold, therefore my out-of-pocket will be much less.” The term out-of-pocket does NOT scream to me that there is NO rebate for what you are about to have done. Yet, in this case, that is exactly what it meant.

I knew that in order to receive a Medicare rebate for a knee MRI at my age, I now (Liberal govt changes to Medicare) needed a specialist referral rather than a GP referral. I had the specialist referral. So I thought I was OK here.

Turns out, Medicare “license” only certain specific MRI machines to be allowed to do rebateable knee MRIs for older patients. Other MRIs I have no idea about, but I will ask if I need any! The machine I had been in? No rebate. It isn’t that they don’t bulk-bill, it is that they CANNOT lodge a Medicare claim for my situation at all. Big difference!

The other incident was similar, but different. I rang to book an appointment to have an ultrasound guided steroid shot in a finger. The staff member taking the booking told me the cost was $285. I explained my having reached the safety net threshold to the staff member. Even then I was NOT informed that the $285 included a non-rebateable item number at a cost of $115. My having reached the Safety Net Threshold was not going to have any affect at all on that component of the bill. Why was I not informed? I have no idea.

When did I find out? After the service was provided, as I paid the bill.

In checking numbers for this article, I have just realised I am currently seeing a provider and paying a bill that is NOT being submitted to Medicare at all. At this point I have no idea why, but I will be enquiring. It maybe there is no Medicare item number for this visit type – is this another Liberal govt change to our Medicare system? When I was working, these sorts of things didn’t bother me and probably if they had happened would have slipped under the radar. Now, being on a fixed income, I pay much more attention to the dollars and cents involved in my medical care, given that is where most of my dollars and cents go these days!

Please note, in the grander scheme of things, these are minor expenses. One contact of mine details thousands involved in a chemo treatment that is not on the PBS for the particular cancer being treated. However, minor expenses, especially for those on fixed or low incomes, mount up. I had visions of a single parent being unable to do the grocery shopping this week because of such a situation. I’m also not an inexperienced patient – I’ve been walking this road for a while now. Yet even I got caught out by the ambiguity.

Be careful.

Robyn Dunphy3 Comments