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 in 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 year 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

Getting Back Into It!

I’d put off writing about my IMPROVEMENTS until I was reasonably sure I was staying on track! I’ve reached the point I’m reasonably sure! If you are catching up, please read A New Diagnosis: and Other New Stuff to understand recent events.

One thing I have learnt is often when we are in the midst of an absolute crap time, we don’t realise just how bad it was until we are out the other side. To give you an example, last week I started swimming again. Given how bad my shoulders had been, there had been no swimming for quite some time. I didn’t realise how long: when I looked back in my Garmin records, I had swum twice in 2023 and not at all in 2024. Had you asked me, I would not have thought it was that long. Lifting weights wasn’t quite as bad, but almost. I’d lived most of those two years, off and on, taking prednisolone and Celebrex. Earlier this year I had two rounds of steroid shots in each shoulder. Of course, during that time I’d also had my second knee replaced and an ankle fused.

The biggest problem had been the inflammatory stuff though, not the surgeries. At one point I had sore shoulders, fingers, wrists, elbows, the unoperated ankle and my neck and TMJ played up as well from time to time. Even my knees were painful at times – after all, after knees are relaced, the original muscles, tendons and ligaments are still there for any inflammatory disease to attack. My blood pressure (BP) was also up.

I am being VERY CAREFUL! Once I realised how much I hadn’t done, I knew I had to be slow and steady. Follow your own advice, Robyn! I had kept walking though. In fact August 2024 was my best walking month ever (well, since I started recording steps) and that only happened because a friend on BlueSky challenged me. But the upper body was a nightmare.

Personal Step records per Garmin. Most steps in a Month: 317,557 31/8/2024

To put some dates around this, my first injection of my new medication was on October 16. A few weeks of loading (weekly) injections, then fortnightly. Yesterday was the eight week mark. I’d said I wasn’t going to be sure about progress until about the middle of December as when I first started I had the previous medication still in my system (presumably it was doing something, even if not much) and was on loading doses of the new medication. By now the old med will be washed out of my system and I’m on the standard injection regime, fortnightly.

One BIG plus? NO Celebrex! YAY! Looking back on my symptom diary, I assessed myself as feeling 15% better the morning after the first injection. I’d noted specifically that elbows and fingers were not as bad. Since then, constant improvement. I have not taken any major pain medication either. The odd Panadol Osteo for my back, which is not surprising given I hadn’t been able to keep up my posterior chain strength for the osteoarthritis.

I did a couple of very tentative gym visits in November to see how my body would react, than on December 1 I started back with a strategy.

Before you look at these numbers please bear in mind for some readers (e.g. healthy young weightlifters) these numbers will look terrible. To a chronically ill person of probably any age, these numbers may look like a bridge too far. And there will be people to whom the numbers look achievable or where they are at or they are already above. To those starting out, DO NOT rush in where angels fear to tread. Seek professional guidance if you can. Read my Pacing articles. Remember, I’m qualified to guide myself AND I’ve had 10 years practice at reading my body. Just because I’m doing something doesn’t mean you should – but it doesn’t mean you should not either. It isn’t really the numbers themselves that are important here – it is the fact I am improving! That’s the important bit.

Yes, to me the kgs look awful! But this is what (re)starting from scratch looks like, so I’m being transparent!

At the moment I am lifting weights every third day. By December 10 I had improved a few things! I did get pec dec on the other two days, just, of course, not the day I’m using here. I’m halfway back to my PB leg press of 160 kg. That is my PB since I’ve been chronically ill, not PB ever. I prefer to only compare within my health status – comparing to a healthy me is unfair and somewhat demoralising, so best not to do it.

I also got back in the pool. Given my shoulders had been SO BAD earlier in the year I am being very careful. I did 10 laps of the 25 metre pool, so 250 metres. The hardest part I found was my breathing! So long without swimming and I was struggling. Breathing during breast stroke was OK, but breathing during front crawl (commonly called freestyle) was a challenge. Today I swam again and my breathing was better. I’d like to swim more often, but lane availability is scarce, sadly. Am looking into how I can schedule more swimming without getting to the pool at 5:45 am – that is NOT a good time for people like me due to morning stiffness. The 50 metre pool has more availability, but until my breathing improves I don’t want to risk it. Very embarrassing to have to stop halfway down the pool.

In summary, I am very happy! My fingers are still a bit bothersome, but manageable. The wrists need strengthening – I could do heavier bicep curls, for example, as the biceps are fine – but the wrists get grumpy if I up the weight too much at the moment. There is improvement though and that is what counts. I’m not trying to head for the Olympics, just maintain and improve mobility and strength. My BP is back to normal, I’ve lost weight and my brain aneurysm has shrunk – a few very nice added benefits!

Robyn Dunphy1 Comment

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

A New Diagnosis: and Other New Stuff

My chronic Illness life has been a a bit hectic of late. Several changes. I was going to title this “New Stuff Coming Out of My Ears”, but thought readers might think I actually did have stuff coming out of my ears – I can assure I don’t. Not yet anyway!

I honestly didn’t quite know how to write about it all. I want to help other patients understand what may happen during their journeys and yet I wasn’t quite sure what was happening to me! So I kept quiet for a while until I could wrap my own head around the whole situation. Plus I wanted to be able to have a positive outcome to talk about. My main message to other patients is do not be afraid to ask the hard questions of your medical team if necessary. Some conditions/diseases are clear, others not so much. Medicine is not an exact science. My thyroid diagnosis was always clear: bloods and imagining are well established. Other conditions are not so easy to be accurate about, especially perhaps in the early days of the condition.

As some readers will know, earlier this year I moved to a different rheumatologist. We will call her Dr IV (Dr Four). I don’t exactly remember why now, but one of the things Dr IV did was send me for a brain MRI. That came back showing while the brain was actually pretty darn good, thank you very much, there is a small brain aneurysm. By small I mean somewhere between 4.5 and 5 mm, depending on who is measuring it, it seems. I am assured we don’t worry unless it is 7 mm. Now, to a doctor dealing with these things, 2.5 mm might seem like the size of the Grand Canyon. To the patient 2.5 mm is a pretty small difference! However, I’ll take the neurosurgeon’s word for it! The medical advice is to monitor. He did send me off for a CT scan as well, but at the time of writing I do not have the results – it was being done more as a baseline for future comparisons. This was, yes, a bit of a shock! (See update 1 below)

Around the same time I was referred by my previous sleep specialist to a colleague of his. Now this was interesting. His colleague, let’s call her Dr S2 (for Sleep Specialist Two), read my sleep study results from two years ago rather differently and recommended a CPAP machine. So this was a whole new adventure too. I will write about the CPAP experience in a later article.

After the above issues, and already on my THIRD PsA medication for the year, I asked both my GP and Dr IV, “Do we have the right diagnosis?”. My GP said, “Fair question!’. Dr IV kinda went “Hmmm” and wrote out a pathology request including tests I had not had for years.

Those tests came back as a bit of a shock! I have rheumatoid arthritis (RA) – the tests were pretty conclusive and my Rheumatoid Factor (RF) was, shall we just say, quite high. There was another test as well that when considered together with the RF is about as conclusive as you can get. My medication was changed that day. So medication number four for 2024.

By now my head was spinning a bit. Brain aneurysm, CPAP machine and a new arthritis diagnosis all in the space of a few weeks. Actually, it is an old diagnosis revisited, as I was first diagnosed with RA in 2014. Then in late 2018 that was changed to PsA. Now in 2024 I’m back to RA.

Or – do I actually have both? Dr IV and I are keeping an open mind on that question. Well, Dr IV more than me – after all she makes the call, not me! Let’s just say I would not be surprised to have both. It is considered rare, but not unknown.

Having both would also explain, I suspect, why I was getting worse – the PsA may have been being relatively well controlled, but in the background the RA was ramping up. I want to be VERY clear – that is MY thought at this time, it has not been suggested to me by my doctors, who are still investigating.

Since all of that, Dr IV has also ordered more blood tests, some of which are new to me. I do not know what the outcome of those will be, I had them done on Friday. (See update 2 below)

How did I feel during all of this? My emotions included anger, fear, relief, gratitude: each of which would come and go. Gratitude Dr IV was going all out to get to the bottom of the problem. Anger that the increase in RF hadn’t been picked up before, fear re the brain aneurysm before I knew the size, less fear (but a little) re the high RF which can be related to many things, not just arthritis. Relief there was an explanation for why I was so sore everywhere! At the time of the new/(additional) diagnosis, I had painful arm muscles, shoulders, wrists, elbows, neck, fingers. Even my wonderful replaced knees were sore. Worth noting when knees are replaced, the muscles, ligaments, tendons etc remain and they can still get inflamed by inflammatory conditions. It was comforting that during this time I coincidentally also had my twelve month final post-operative check with my knee surgeon and both knees looked perfect from a mechanical perspective on x-ray. So the knee pain had to be inflammation related.

As most of us know, some of these medications can take months to work. I was really surprised with my new medication this time. I’m not perfect yet (probably never will be), but I’m so much better than I was on the day I took the first injection! I am off Celebrex totally and only on 7.5 mg of prednisolone per day. Hope to get off that entirely, of course. My blood pressure has improved too (Celebrex may increase some people’s blood pressure and I may be one of those people).

Today for the first time in ages I walked 3 km in one hit. I always walk 4 km a day, but lately 2 km has been my maximum distance in any single walk. Not only that, I did it at a pace of 11:51 minutes per km. I was very happy with that!

Thankfully, irrespective of whether I have RA, PsA or both, Movement As Medicine still applies. I don’t have to change my regime. In fact, Dr IV said to me she sees my dedication to Movement As Medicine as being what has got me through the years so far. That also made me happy.

This story isn’t over yet. There are more tests to come back, I still need to follow-up with the neurosurgeon for my own peace of mind and there is still the question of do I have both RA & PsA. The medication I am currently on treats both, which is comforting.

I have no sore bits anywhere. The capometacarpal joint areas of the index fingers are still both swollen, as are the areas around the ulnocarpal joints in both wrists. Dr IV tells me it can take a while for the swelling to go down. The heat of those swellings has gone. I am still limited with some finger mobility, but I’m working on the fingers and there are improvements. The top photo is my left hand today (can’t cross fingers), this photo is my right hand today (can cross fingers).

The video was captured last month. You can see on the left hand I can touch all my fingers to my thumb. On the right hand, not yet.

The best thing? No pain medications so I can hit the weights again (have done a few sessions already) and get those weights back up! Will I get back to 160 kg on the leg press? I don’t know, but I’m going to try!

Updates November 13, 2024

  1. I rang my neurosurgeon yesterday, just for peace of mind, for the CT results. That is when I discovered I forgot to tell his PA when I had the CT done. Where I had it done, they don’t send the results automatically. I burst into tears on the phone out of frustration at myself and embarrassment. The memory AGAIN. In fact, during that call, I could not even remember having the CT done, but I knew I had. I checked my calendar for the appointment and just after I found it, I REMEMBERED! It was in one of the rear buildings and I’d been trying to remember going to the main building. Nothing urgent about the results, but I will see neurosurgeon later this month to go through both the results and the plan for the future.
  2. I received a message yesterday that the blood tests done on Friday are not concerning, so THAT is a major relief!

Robyn Dunphy7 Comments
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
A calming scene

The Joys of Deciphering Health Bureaucracy

This article applies to Australia specifically, although there may be other countries with similar ridiculous rules, so watch out.

Let’s set the scene:

  • I am an Age Pensioner, this means I have a Concession Card
  • I have already hit the PBS threshold for the year
  • Therefore my prescription refill today should have been zero cost to me

So what happened? Unusual for me, as I do most of this electronically, this particular prescription I had in paper form. The original prescription was dispensed on July 22, 2024. The dosage prescribed was three tablets per day. I was given two bottles by the pharmacist, each containing 60 tablets: a total of 120 tablets. Now, I am sure even a primary school child can calculate 120 divided by 3 equals 40. At the prescribed dosage, that two bottles would last 40 days.

There was a typed note on the repeat paperwork: “if needed before 11 Sept 2024 consult pharmacist”. By my calculations, that is 51 days. I really had no idea why the message was there – it made no sense to me.

Given the nature of my disease, I ensure I do not actually run out of important medication. Although this is not pain medication as such (it is a corticosteroid), pain medication is a good example of something NOT to run out of. Because the very time you need it, it is likely to be midnight on a Friday night.

The quick calculators amongst my readers will already be saying to themselves “Why didn’t she get the repeat on August, 31. Hadn’t she run out?” Good point. VERY good point. In my particular case, I am tapering off this medication, but the computer doesn’t know that, the PBS doesn’t know that, my pharmacist doesn’t know that. All they know is the dose prescribed. As I am tapering off, I am using less. As I type, I’m on one tablet a day. If all goes well, I’ll be able to stop taking this medication, but not everyone who is on it is in that situation.

I needed to go to the pharmacist for something else today and figured I may as well get this refill while I was there. I pointed out to the staff member who took my repeat paperwork that the mathematics seems rather wrong. She didn’t know. They were very busy, so I didn’t worry about it.

I collected the medication, headed to the payment counter and was charged $7.70. WHAT? No, I’ve reached the PBS threshold, this should be free for me.

I went back to the dispensary and sought clarification. Apparently, the PBS has a rule in place, irrespective of the prescribed dosage, that if you are dispensed two bottles you wait 51 days for the free repeat refill OR you pay. In other words, the fact you’ve hit the threshold is ignored. The dosage is ignored – i.e. the simple fact 120 tablets will only last 40 days at the prescribed dose.

I was stunned! For me personally, it doesn’t really matter because I could have waited until September 11 (or just paid, as I did). My immediate thought was for all the other patients out there with chronic illness being subjected to this rule. How many other medications does it apply to?

What if the patient does run out and then is too sick to actually go to the pharmacist and has no-one to go for them? That could well happen to me.

In my ten years of being a chronic illness patient this is the stupidest system glitch I’ve ever come across. Unbelievable.

I am prepared to bet there will be a lot of doctors out there who are unaware of this little rule too. Could my GP have prescribed under the new 60 day rule? I don’t know much about that. Looking at it quickly now, doubt I’ll ever qualify – one of the criteria is “live with a stable ongoing health condition”. Ongoing, yes. Stable? Very unlikely unless some magic medication is developed. Some patients are stable, a lot of us are not. Also, this is a medication we try to get off and stay off if at all possible, not something we want to take for life unless absolutely necessary.

The bottom line is, be aware there are things we do not know that can trap us, even after ten years of navigating the system.

If the patient does not have a Concession Card but had hit the threshold, they would have had to pay $20.55 to get the refill before the arbitrary date.

I have tried, as a patient, to find the actual rule. I can’t. And that is also annoying.

The photo I’ve used is just to be calming – any of the pictures I could post of the paperwork etc would be identifying. I’ll save them for my letters to the Health Minister.

Robyn Dunphy2 Comments

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

Tough, But Worth It!

Yes, I’ve been very quiet. VERY quiet. I know, I’m sorry. Recovery from my November surgery took quite a lot of effort. On top of that, the mobility restrictions meant my psoriatic arthritis decided to complain, so I was fighting on two battle fronts.

My ankle surgery took place on November 28, 2023. My first completely pain/discomfort free walk was March 22, 2024. 16 weeks and 2 days.

I’m not repeating the details previously documented, so if you are catching up, read the surgery article linked above first! The moon boot was better than the cast and knee scooter for sure. I could shower without “bagging” my leg in plastic bags! I didn’t have to sleep in the moon boot! I was no longer doing three-point turns in my small apartment or constantly reversing in and out of spaces. I could drive! I was no longer so totally dependent on other people, I had a modicum of freedom.

I was allowed to go to the gym to do upper body work. ONLY upper body work, but at least it was something! The gym staff looked at me a little askance, but let me in.

I was to gradually increase the percentage of weight on that leg each week and could try proper shoes at week four of moon boot life. I will admit I snuck into shoes a couple of days early because the moon boot meant my legs weren’t the same length and my right piriformis muscle was not overly impressed with that situation. I was VERY careful though.

At my 12 week post-op my surgeon was very happy with how everything had knitted and I was finally allowed to go to the physiotherapist. It is amazing how weak your calf and ankle muscles can become after 12 weeks of no use. Surprisingly, this physiotherapist wasn’t as bossy as the knee physiotherapists: exercises every second day instead of every day.

On February 14 I started short walks – between 500 and 800 metres depending on how the ankle was feeling. I managed my first 1 km walk on February 20 and have slowly built up from there. March 21 I walked 2 km in one hit! I should add I was doing multiple walks a day by this stage, with the physio’s permission.

While the ankle/foot wasn’t really painful, it wasn’t 100% comfortable either until March 22. That was the day I felt free!

Funny conversation with surgeon at the 12 week post-op.

Me: “So I have no restrictions now?”
Surgeon: “No, you’re fine!”
M: “So I can do the leg press?”
S: “Sure!”
M: “So what weight can I start at?” (Thinking to myself 50 kgs seemed reasonable to start)
S: “Oh, just the plate, no weights!”
M: Thinking – that sounds like a restriction to me!

It always pays to clarify. I think maybe he didn’t consider his nearly 70 year-old patient was going to be doing things like the leg press. Have I got news for him!

I have interesting rehabilitation exercises, such as standing on one leg for 30 seconds and calf raises on one leg. Now, to be honest, I still cannot do the one-legged calf raise, but I’m getting there with a little help from the other leg. A little less help each day. Hoping I can do the single leg calf raise by my next physio visit!

So yes, it was well worth it, but man alive, am I glad I only have two ankles. I’ve learnt a lot of this experience and will plan the next one with the knowledge I now have about how VERY different this is from knee replacement surgery.

Of course not every ankle surgery will be exactly the same as mine. Other patients may spend less time in a cast for example. Or more time in a moon boot. It definitely isn’t as easy as knee replacement though.

Due to the lack of exercise during those weeks of recovery, my back is not happy. It is getting happier now I am back to a more normal routine, but some days have been quite tough. Moving is not as bad, most of the time, as being stationary, luckily. My back has been under control for some years, due to the work I keep doing on my posterior chain to support it, but at my age we decondition faster than in our twenties – I’m having to build up that strength again. The shoulders and wrists didn’t like the crutches either – the psoriatic arthritis complained. Both wrists and shoulders are now improving with increased exercise and no irritation from the load of crutches.

One thing I wasn’t happy about was once I could walk 1 km, I discovered I’d lost another point on my VO2 Max reading. I was devastated. While I don’t do high intensity exercise and therefore don’t expect a high VO2 Max reading, I do want something healthier than “poor”! Thankfully, I’ve worked hard enough this week (shown below) and last week to recover that measly one point. The lost of the one point had worried me because it was the continuation of a downward trend that started early 2023 and so desperately want to turn it around and get back to where I was.

Steps per day March 19 - 25
Formal measured walks per day March 19 - 25

So that’s it for this ankle. When the next one will be done is debatable. Naturally the surgeon looks at risk mitigation from the perspective of the risks of surgery. I’m looking at it from the recovery perspective. It doesn’t matter how brilliant his surgery is if I am not well enough to manage the recovery properly and at this point in time I’m still not sure we will get my psoriatic arthritis under control. I needed my wrists, shoulders, piriformis and back to be better behaved. I managed, but it was tough.

Onwards and upwards! I need another 3,700 steps today to hit my daily goal, so off I go!

Robyn Dunphy4 Comments
Fibreglass cast

Knees Breeze, Ankles Rankle

As regular readers know, I’ve become a bit of a patient expert in the field of orthopaedic surgery of recent years. Two total knee replacements and bilateral foot surgery. On November 28 I added a fourth: ankle surgery, fusion of the subtalar joint. There were apparently two options for my ankle situation. The surgeon, at my pre-op appointment, was thinking aloud in determining which approach to take. If he had “told” me I was 68 one more time….. My age was relevant to the decision. A little too relevant in my view!

If you are catching up, here are links to my very excited articles about the previous surgeries:

Then I was silly enough to go for a second lot of surgery in 2023 – the left ankle in November.

Sidenote: When I write I aim to give other patients a realistic picture of whatever I’m discussing in any article and this is no different in that respect. This article is different from my usual in that THIS surgery is more difficult to deal with and I am depicting that in my words deliberately. I am not sugar coating this.

Let me share something – ankles are not knees! With knees, you are up and about the next day. Yes, you are on crutches, but you are MOVING. Ankles? Not so much. OK, not at all. Yes, I was forewarned that the first two weeks were going to be in a half cast and I’d essentially be able to do very little. Rightly or wrongly, I was under the impression I’d most likely graduate to a moon boot at the two week mark. That is not what happened. As I write I am STILL using a knee scooter. I HOPE to graduate from that on January 8, 2024. To a moon boot and crutches. At that point after knee surgery I’d be back in the swimming pool and walking two or three kilometres a day.

Let’s go back to the beginning. I duly fasted as instructed on the day of surgery and arrived at the hospital at the appointed time. Usual pre-op stuff, then into the slicing and dicing bit. I woke up post-op and the nerve block hadn’t worked (not uncommon, I am told). Issue number 1. Fantastic anaesthetist, he did a second nerve block which worked fabulously. Issue number 1 solved.

This is how my foot looked after surgery. Yes, I know – the same hospital PJs! That cast goes to just under the knee.

Half cast
Post-op half cast

Surgeon stopped by and told me everything went well. Good to know. Off I went to the ward. As I was only in for the one night, I was in a shared ward. Issue number 2 – the patient next to me did not turn her light off all night. I learnt later she can’t sleep in the dark. Well, I can’t sleep with the lights on. So I got no sleep.

A nurse told me I could use crutches to go to the bathroom. Issue number 3. I say no, I am under very STRICT instructions to not weight bear on the operated leg. Not even a little bit. Nurse disagreed, but said physiotherapist would tell me that if I am worried. Physiotherapist agrees with me. Knee scooter arrived! Sorry about the lousy photo, but it is what it is.

Knee scooter

Worth noting at this point that the other option for getting around without putting weight on the operated joint is to hop with crutches. Or hop with a walker. Hop. At 68 with an inflammatory arthritis. That ain’t happening. I’m not a 20 year-old footballer with massive upper body strength. I actually asked that physiotherapist if anyone could hop with crutches. He said, “Just quietly, none I know of.” That made me feel marginally better.

Now, of course, and this is critical for later in the story, at this point I didn’t need any pain medication – I had a very effective nerve block.

The rehabilitation hospital called and I got “checked in”. An ambulance would transfer me to the rehab hospital. The ambulance ran late. I got to the rehab hospital too late to see a doctor for admission. One was at a funeral and one was on a day off. I had NO pain medications charted from the surgical hospital because I hadn’t needed any. Sooooooo… when the nerve block started to wear off, we had a problem. I should say I had a problem. That took some time to resolve, I have to say. Issue number 4.

I also learnt it is VERY difficult to advocate for yourself when you are in post-operative pain. It is not as if I was a “new” patient to this hospital – this was my fourth trip through this hospital, the last in July. Yet I struggled to get the required outcome. Finally, this too was resolved, but it took longer than I found appropriate.

I wasn’t a major fan of my room’s frosted window either. Very “enclosed” feeling, but not much could be done about that. It is due to the close proximity of the building next door.

Frosted window in hospital room
Frosted Window

Of course I painted my nails! Did you really doubt that would happen?

painted nails

Once we had the pain under control, I ended up with Issue number 5. I was constipated for seven days. Trust me when I say this was NOT fun. I was swallowing Coloxyl and Movicol like there was no tomorrow. Then they tried Microlax. Then Fleet enemas (twice), took abdominal x-rays and determined I was “loaded” so resorted to a colonoscopy prep. Not that I was having a colonoscopy, but something was needed. Took three days to clear – we know that because I had a follow-up x-ray a few days later and I STILL wasn’t completely clear. Issue number 5 was eventually resolved though. I did not have this problem with either of the knees, I think the lack of mobility was definitely a contributing factor. While pain meds are known to cause constipation, I was definitely on pain meds after the knee surgeries (I’m not a martyr), but I was WAY more mobile. I also wasn’t on pain meds very long with this surgery. I don’t remember which day I started reducing the dose, but it was quite quickly compared to knee surgery and I was off pain meds completely well before I was discharged.

I also managed to damage myself – twice! We won’t talk about how I sliced a nipple (it bled) with a finger nail. We can talk about how I ran over my big toe with the knee scooter and ripped a toenail to pieces. The broken bits later ripped off completely. Yes, the psoriasis was having a bit of a field day in the left picture. Sorry – goes with the territory.

Broken toenail
ripped toenail

Issue number 6 was a clash of dates. With the knee surgeries, I was in the surgical hospital for four or five days, so my two week post-op appointment never clashed with my discharge from rehab date. In this case, because I was transferred to rehab the day after my surgery, the post-op and discharge were the same date. For overseas readers, the health insurance covers two weeks of rehab. Not good, as the physiotherapists in rehab like to wait until the patient knows what the next stage is so the patient can be taught how to manage while still in rehab. For example, had I gone into a moon boot, they’d teach me how to manage mobilising in a moon boot. So there was a lot of discussion about seeking two extra days of cover from the health fund. That happened. Thankfully. But it was another stressful complication.

This bit was a complete shock! I didn’t get a moon boot, I got a fibreglass full cast. From just under the knee to my toes. Still no weight bearing allowed. I burst into tears. I knew the knee scooter could not be maneuvered in my bathroom, so what was I going to do? The surgical Fellow (my surgeon was not available) suggested I just spend another two weeks in rehab. I’m not sure the surgical Fellow, here temporarily from overseas for experience, really understands our health system yet. One can’t just stay an extra two weeks, that’s not how it works. After considerable discussion it was decided to build up the bottom of the cast (under my foot) and I would be allowed to use crutches to hobble from my bed to the toilet (at home, this is). By hobble I mean place that foot on the floor for balance only, absolutely as little weight on that foot as possible – just so I didn’t have to hop.

Fibreglass cast
Fibreglass Cast

Issue number 7 (unresolvable) relates to the knee scooter and my leg length. The specifications of the scooter include that it can be adjusted for people from 157 cm tall. I am 164 cm, so it should be fine. It isn’t. I end up propelling the scooter on my tippy toes, not the safest maneuver ever. Also, instead of being able to keep the supported leg at a 45 degree bend at the knee, the back of my thigh presses down on the fibreglass cast which has an edge like a knife. I now have a dressing on the back of my thigh. When standing, all the weight is going through my right leg as in order to have my right foot flat, I am standing with no weight going onto the knee scooter. More load on that new knee.

I can also state I have done more three-point turns on this thing than I have done in 53 years of driving my car! Knee scooters could also do with rear view mirrors as a lot of reversing is involved if you live in a small apartment.

Issue number 8 is also, I think unresolvable. Use of crutches puts considerable load on my shoulders/upper arms and wrists. As regular readers know, I have had issues this last couple of years with controlling the psoriatic arthritis (PsA) inflammation. Yes, I could have waited until the PsA was under better control, but that might never happen. I did try a walker, but the load on the shoulders was greater, so we scratched that idea.

The Occupational Therapist visited my home with me the day prior to discharge and confirmed I would not be able to use the knee scooter in the bathroom. As I did not have official confirmation of the surgical Fellow’s strategy, rehab wouldn’t discharge me. They couldn’t get hold of the surgeon (he was in theatre that day) for confirmation. The surgeon rang me the next morning – I promised to be good and he confirmed I could go home. How good I’ve been will be determined on January 8 when I have an x-ray.

On reflection, knowing what I know now, I would have waited for a few more months after the knee surgery. The load on the newest knee is quite high, compounded by the inability (in my case) to be able to perfectly adjust the knee scooter. There is also a lot of pivoting on that leg required, getting on and off the scooter. Prosthetic knees, especially new ones, are not really a great fan of pivoting.

This is not surgery to be undertaken without very careful planning. If, like I do, you live alone, even more planning is required. If you can stay with a family member or friends, I highly recommend it. The feeling of uselessness and being almost totally dependent on other people is driving me to distraction. Not being able to walk, swim, be active is so frustrating. Showering is a major task: the leg has to be “bagged” in plastic bags. Getting into the shower recess without weight bearing AND without falling over is a challenge. I recommend using a raised toilet seat instead of a shower chair as it is easier to wash the private parts. Not sure who designed shower chairs, they need a rethink.

Even getting to the toilet is a challenge. Let’s say I am in the lounge room. I need to standup on one leg, mount the knee scooter, propel myself to the bedroom, transfer to crutches, push the knee scooter back out of the doorway, hobble to the toilet, do a 270 degree turn, sit down using the grip rail and one leg. It occurs to me men might have a slightly easier time of this (most trips, anyway)! The return journey requires a 360 degree turn at the bed in order to transfer back onto the scooter and I have to back out (reverse out) of the bedroom and do a three-point turn in the kitchen area to be able to head back to the lounge.

The friends who picked me up from hospital when I was finally discharged, who have done pharmacy trips for me, who hired a wheelchair to get me in and out of their home on Christmas Day, may never really understand how much their support and help has meant to me. I hope at some time in the future I can repay their wonderful kindness.

Was the surgery worth it? At this point, I don’t know! I must stress, I have every faith in the surgeon, he did a great job on my feet. But the reality is I won’t be able to “test” it for about another six weeks.

If you find you are going to have ankle surgery, my advice is make sure you completely understand what the “worst case” recovery period scenario is likely to be and plan accordingly. Often times (and with me every time so far) when they get the patient on the operating table they find more needs to be done than was perhaps anticipated – this happened this time too. I also had an osteotomy as part of the operation.

I certainly don’t want to turn anyone off having their ankles “repaired” if necessary. I do want to highlight ankle surgery recovery is nothing like knee surgery recovery from the patient perspective. I have hated every minute of the last six weeks. I’m not going to like the next six weeks either. At least it is only twelve weeks out of the year.

I constantly tell myself so many people are worse off. My son-in-law has another twelve months of leukemia treatment to go, for example. Even so, every day is a challenge. Every day is boring. Every day is inactivity. Knowing one’s situation could be worse isn’t much consolation on a day-to-day basis.

Technical note: the surgeons like to go down the leg. So ankles are typically done after knees. Having sound ankles is important, as wrecked ones, like mine, could lead to damaging my wonderful new knees. We don’t want that! Of course, if one doesn’t need new knees, then it isn’t an issue, but for those of us who do, there are rules.

March 24, 2024: Read Part II, now I have tested the ankle.

Edited Jan 8, 2024

YES! Got rid of the cast! Now in a moon boot. Just editing to add the x-rays so you can see what I had done. I was expecting to see three screws, but apparently the triple arthrodesis description on the paperwork was a clerical error. I’ve got two screws and a bit of something to stabilise the front of the foot. The metal in the actual toes was all the bilateral foot surgery, not this surgery. Surgeon is very happy with healing so far.

Robyn Dunphy3 Comments