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 DunphyLeave a 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 Dunphy2 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 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

Yippee! Finally, Second Knee Replaced!

That was a long journey! But I am all good, the second knee replacement is done and shows every indication of being as great as the first knee replacement. July 26 was New Knee Day!

I wrote comprehensive articles relating to my first knee replacement. This time I’m writing about the differences between the two experiences.

The 2020 articles:

I have NOW been told my 2020 recovery was “exceptional” while this recovery has been “typical”. They didn’t tell me that back in 2020, just that I was doing “so well”.

The Lead Up

As with the 2020 operation, this initial operation was also cancelled and rescheduled. In 2020 it was due to Covid-19 lockdowns. This time, in 2023, it was due to my psoriatic arthritis (PsA) being out of control. As well as medication for the PsA, I was also on NSAIDs and prednisolone as we (hopefully) waited for the medication to kick in. For surgery I had to reduce the NSAID dose from 400 mg p/d to ZERO. I had to get the prednisolone down to 2.5 mg p/d. I wrote about those requirements and what happened when I did a trial run in Crossing My Fingers – Again.

With the change to pain medication for me, my GP and I were confident we could handle the 10 days required with no NSAIDs, but yes, IT WAS DIFFICULT. By the time I was due to be admitted, I could barely use my hands at all before 11 am, as an example. The hospital admitted me the night before on medical grounds as there is no way I could have got myself there by 6:30 am the day of surgery.

I’ve talked about my teeth issues: yet another tooth (the third) played up just prior to surgery – in fact it split and half basically fell out in the dentist’s hand. My dentist advised it needs to be removed by an oral surgeon and did a temporary patch job. My GP had prescribed precautionary antibiotics which I arrived in hospital with. That caused quite a kerfuffle and there was talk of cancelling the surgery. Thankfully, that did not happen. My surgeon does not like surprises! Good thing too, but certainly was a bit traumatic at the time.

Last time neither my PsA or my teeth caused any complications!

Surgery

Pretty much the same as last time – I was out for it! However, surgeon came to me after surgery and said it was very “messy” once he got in there. The inflammation had caused damage to muscles that he could “stick his fingers into” (the holes). Will the muscles heal, I asked. He believed so. I forgot to ask which muscles! He last described it as “terrible”. I’m not sure if terrible is worse than messy!

Reading the letter the surgeon sent to my GP, it was again the popliteus muscle that was so badly damaged. This is the same muscle that was being dissected by a cyst in 2020, just this time it was worse.

The scar looks pretty much a mirror image of the left leg! it is also the same length – 23 cm for those into scar dimensions.

Post-Surgery

One good difference, one not so good.

First, the good difference. In 2020 my glutes spasmed uncontrollably and very painfully 10 hours after surgery. In the end, Lyrica was used to solve the problem. On that basis, the peri-operative physician decided to start me on Lyrica immediately post surgery. It worked, no spasms. My glutes, ITB and piriformis were still painful and needed physio work, but there was no crazy spasms like last time. Yay! I was also on far less pain medication overall with the change my GP and I had made and which the surgical team adhered to.

The not so good difference was my veins kept collapsing and we had to find new cannula sites. This was not fun, especially at 2 am in the morning. Why were they causing issues? I don’t really know, although having been on prednisolone for so long pre-surgery was suggested as a possibility. I ended up with quite a few bruises. The machine would beep madly and display “Downstream Occlusion”. I’ve left out the bruise photos!

The darn catheter was not a relief. I’d been rather looking forward to not having to worry about toilet trips immediately post surgery, but I felt as if I wanted to “go” all the time. Very annoying!

The x-rays look pretty much like last time! As does the dressing.

Of course I got makeup on and my nails done! The nails were done before the makeup and my hair is wet in the photo. But I was in hospital, so I’m allowed some leeway!

Rehab

Patient transport (to move me to the rehab hospital) was about 2.5 hours late and I nearly missed out on lunch!

Basically, rehab went pretty much like 2020. One difference was I left rehab still unable to do a straight leg raise. I managed to get those happening by four days later. It just took longer this time to get those quads really firing.

The other very sad difference was the wonderful massage therapist who had rooms at this hospital in 2020 is no longer there. Thankfully the physios treated my glutes and ITB!

The food was pretty good!

Home!

A hint. DO NOT accidentally hit your operated knee on anything. I did and I think I set myself back a week. Very grumpy with myself. I was a bit concerned and went to the surgeon’s office to have it checked on Monday (August 21). The nurse told me it looked fine, just to take it easy for a few days. So I did! Unusual for me, I know.

I’ve had ice packs on the knee and heat packs on my hands and glutes! Plus the spikey ball got a bit of use on the glutes too. Ice packs are good after the rehab exercises.

I am still taking pain medication, whereas in 2020 I had stopped by Day 20. As I write, this is Day 33 for this knee. I am older, the knee was messier and I accidentally hit it. Plus my PsA is still not under control (i.e. inflammation). My GP says to be realistic about the differences. I have reduced the pain meds considerably from when I first got home so that’s good.

I also have a theory about sleeping. My knee will be fine all day, but I’ll have pain or discomfort during the night. One night I woke up thrashing my leg around the bed, as if trying to shake off pain. Even this morning I woke up with the knee quite stiff. I think during our waking hours we are very careful and (usually) ensure we don’t do anything to hurt the knee. But when we sleep we toss and turn and can put the knee in positions it doesn’t actually like. We wake up as a result. Pain and/or stiffness can result. I wonder if bracing it at night might be a plan, but that only occurred to me today.

I am doing the rehab exercises religiously, as I did last time. On Friday (August 28) my flexion was measured at 128 and my extension was 100%! I never got to 100% extension with the left knee, I got to 98%. But I did get to 145 flexion at week 10, so that is again my aim. I may not get it, as I am heavier now than I was in 2020 due to the PsA and related meds this time around. It is still my target though.

I am walking every day. Started with two little walks a day, gradually increased. Today I was back to my favourite walking spot!

Now, skip the next photo if you are squeamish. I think it looks great! Looks better now, this was a week ago. It is getting the Vit E treatment now. The scar from 2020 is barely visible any more.

So that about sums it up. As for the PsA, six days before surgery my rheumatologist changed my medication again, but I wasn’t allowed to start the new medication until 10 days after my surgery. It may take three months to know if this one works, so I am back on the NSAIDs and prednisolone while we wait. This is medication number 8. The hands are a little better now, but I am scared of counting my chickens before they hatch. The shoulders are also a little better. I do think I’ve been keeping Voltaren in business!

A Thank You!

Again, a very big THANK YOU to my surgical team. Same surgeon, same anaesthetist, same peri-operative physician as 2020. Absolutely fantastic. I am so happy to have matching knees!

Robyn Dunphy6 Comments

Down with the Bad, Up with the Good

Thankfully, my second knee replacement surgery is back on the agenda! Woo hoo! I’m excited!

I suspect some people may wonder why I am getting a knee replaced if I can walk 7,500 to 8,000 steps a day and do “formal” walks totaling 4 kilometres a day. How can my knee be THAT bad if I can do that? Only due to great care and diligence, let me tell you. The aim of this article is to give some tips on how to manage walking leading up to surgery. If I don’t replace the knee, I am very limited in what I can do. I can’t spend my life walking in a straight line.

As described in Crossing my Fingers – Again, we felt my new biologic was finally kicking in. My GP wanted me to keep my medication dosages stable for a week or two, which we did. On May 30 I dropped my NSAID dose by half and have managed to maintain that. I saw my GP again on June 6. We felt if I got a surgery date, we’d make it. So I have a date! Next month! Now, we recognise that during the 10 days before surgery where I have to be at zero NSAIDs, I MAY have to increase my pain medication to compensate, but as this is only for 10 days, that’s acceptable. I did something similar for the last knee surgery too (there are links at the bottom of that article to the full knee replacement story). I also have to reduce my prednisolone, which I have starting doing this week. I’m NOT pain free, by any means, but I’m surviving!

I do have to be very careful to keep the bung knee in line, no twisting! I can’t fully extend it, although flexion is not quite as bad. Bending down to pick something up off the floor? OUCH! Having it bent while sitting at a dining table, for example, results in pain when I first get up from the chair.

I need to keep exercising to ensure I’m ready for rehab. Last time I was doing glute bridges on the dining table. Sadly, down I’ve downsized, my dining table is doubling as a desk, so I have to find other ways.

Here are my walking tips.

  • Make sure you have good, supportive shoes. This is an absolute must.
  • Choose a pleasant place to walk if you can. The photo above is where I love to walk. It is encouraging!
  • Keep an eye on the terrain. If I accidentally step into a small pothole with my bad leg, the pain is NOT GOOD.
  • Pay attention to your posture. If walking in a shopping strip, shop windows can be useful. In a park, check your shadow. Is your back straight? Shoulders back?
  • You may start limping because your body may decide to shorten your stride on the bad leg without you even thinking about it. Try to maintain the stride length if the pain is not too bad. This will depend on several things: what pain management program you have going, how bad the joint is, etc. You will need to “warm up” first, but I find I can control the limping without increasing the pain. Why is this important? Because you don’t want to shorten and/or tighten soft tissue like tendons prior to surgery if you can avoid it.
  • Down with the bad, up with the good. When negotiating steps, stairs or gutters on pavements etc, down with the bad leg, up with the good leg. Why? Less bending of the bad leg (especially bad knees). I stupidly walked down the stairs to the car park in a hospital the other day. Very bad decision, I should have waited for the lift! Even with this tip, stairs are hard to negotiate!
  • Inclines and declines. Where I walk there are very slight (well, very slight for MOST people) inclines and declines. Some on the actual path, but also bridges like this. While I have little problem with the incline, the decline is difficult. Depending on where the damage is in your knee (or other joint) you may find the reverse, or you may find both are a little challenging. Slow down, hold the rails if there are some, maybe decide that track is not for you in future.
Incline Decline
  • Don’t walk until you’ve “thawed out”. As we know, psoriatic arthritis is notoriously bad in the mornings. I take time in the morning to gently thaw myself out. The knee awaiting surgery will most likely also stiffen up overnight. While some mornings are better than others, I rarely do my first walk of the day before 10 am, sometimes not until 11 am. Even then, the first 200 metres or so are warming up.
  • Split the walking if at all possible. I’m retired, I can walk whenever I like, but obviously some patients are still employed. If you can break up the walking, do. At the moment it takes me about 15 minutes to walk a kilometre. You can fit a kilometre in here or there throughout the day. Take a slightly shorter lunch and a longer tea break, perhaps. Not possible in all jobs, I know. Winter means walking after work is not really appealing. Think about ways you can split the load.
  • As we all have different pain management regimes, I can only speak of mine. At the moment I am on a slow release (SR) twice a day and have some instant release (IR) for breakthrough pain. On a day where I’m not too bad, I may need no IR at all. If I am feeling the knee is a little too grumpy, I’ll time the taking of an IR (maybe only half) so that it kicks in before I start walking. This is all about listening to your body.
  • When you get home from a walk, I suggest elevating your feet for a while, but do not allow your legs to “freeze up”.
  • Remember to adjust your goals if you are doing other “stuff”, as I discuss in Why is There a Dip in My Stats?.

Once I have done the first walk of the day, I usually have very low pain levels for the rest of the day. We are all different, our joint damage is different and some, like me, have underlying conditions such as psoriatic which do complicate matters. So while that is my situation, I accept it may not be yours.

I also have two ankles requiring surgery. The left ankle is very problematic at the moment. When I was on my higher dose of NSAID I would know when I hit 500 metres on my first walk of the day as all of a sudden, the ankle would stop hurting as much. When I dropped the NSAID dose on May 30, from then it has taken about 800 metres before my ankle stops hurting. Hence it is important I time that IR dose properly if I feel it necessary. When I say “stop hurting” do I mean pain free? No, sadly, I don’t. Some days are better than others, but the level of pain is low enough that I can keep up the walking. And, once it is gone, it is pretty much gone for the rest of the day, thankfully.

We are all different. Please talk to your doctor and/or physio about what may be specifically appropriate for you.

Do not expect every day to be the same. For some weird reason this morning was awful for me. I even battled to pull my sheets out of the washing machine (nothing to do with my knee). I had a nanna nap after lunch (VERY unusual for me). Yet now, as I write, I am fine. I reduced my prednisolone yesterday morning, I think my body is adjusting to that reduction.

If you have any questions, I am always here to help if I can.

Addendum: The following is a good article from The Guardian about walking technique.

‘I’m not just faster, but taller’: how I learned to walk properly – and changed my pace, posture and perspective

Robyn DunphyLeave a comment
Walking Graph

Why Is There A Dip In My Stats?

Above is a snapshot of my walks for the last four weeks. In my last article I wrote I was improving. Yet we see there was dip yesterday. Why is this so? You’ll be pleased to know it is a deliberate dip. A very deliberate dip, in fact. Recently I wrote Let’s Revisit Pacing. If you are new to my work I strongly suggest you click that link and read that first as this is, essentially, a sequel. A real life example.

Improvement has allowed me to get to the point I am walking 4 kilometres each day: but that was all I was doing! At least that was my primary use of energy over and above actually fueling the bodily functions that keep us alive: pumping blood, breathing, digesting food etc.

Yesterday I did two activities that require energy, that chew through our internal battery charge. I had a shower and I did grocery shopping. This wasn’t a “nip down to the shops and grab a pint of milk” trip, this was a monthly stock up. When I got back to my apartment it was four trips between my apartment and the car to bring everything inside. Then the effort of putting it all away.

When I initially wrote about what I call our internal battery, I stated I didn’t have a charge meter on my arm! I do now: my Garmin watch. Here it is for yesterday (Saturday) compared with Thursday. For whatever reason, I hadn’t charged my battery as well overnight Friday night, so I was already a little low on fuel Saturday morning. I will state I am not sure how accurate this is for chronically ill people – I’m working on watching it carefully – but it is certainly an indicator. Blue is charging your internal battery, orange is using it up.

Another point to note is that most of the step counters will not register steps, or register steps accurately, if you are pushing a shopping trolley (or similar activity). Very annoying, as I think I walked about 1,000 steps just around the supermarket. Consequently there is also a dip in my steps for yesterday, even though I was moving. For those wondering the blue bars below are where I did not achieve my daily goal of 7,500 steps. Green bars are goal achieved!

Why not 10,000 steps you ask? Ahhh, well, yes, I have that covered too! Read We Need Personalised Numbers to understand the 10,000 figure is a myth.

Healthy people reading this will most likely understand shopping uses energy. They might raise an eyebrow over the shower taking energy. Trust me, for most of us chronically ill patients, a shower consumes energy. Many of us need a rest afterwards. I don’t usually, but I do at the moment.

What I did yesterday was adjusted my activities so that I did not Boom/Bust. I don’t need to burn through my internal battery one day then be wiped out for the following two or three days. Having a goal of 4 kilomtres a day is great, but at this stage of my “comeback” I am not risking any post exertional malaise (PEM). If I have to do something, like the grocery shopping, I will adjust my walking goal. Hopefully. in a few months I won’t need to: I’ll be back to my “normal”. Right at the moment, I’m not taking that risk. When I do head back to the gym for strength training, initially I will drop my walking goal for that day.

Using Movement As Medicine is not a simple “just get out there and walk”. It requires careful planning and monitoring. I hate “bust” days and monitor myself very carefully to avoid those days. Over time, following the pacing principles, I can do more. Pacing is the golden rule here! Today I walked 5 kilometres. I’ve been working up to it and I did nothing else that used energy today (other than writing this, of course).

Robyn Dunphy1 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