Arthritic Chick- the truth about life with Rheumatoid Arthritis

14/07/2025

I’ve been offline because I’ve been sick. Rituximab infusion was rough and im having my second dose in Wednesday. I’m doing better and plan to get back to work. And create more content debunking the lies and fraudulent research around opioids and chronic pain.

14/07/2025

I have been in s**t shape for quite a while. Haven't posted much. Have written a few substacks. That's where most of my focus is these days, chronic pain / opioid advocacy.

I have just started Rituximab. Its knocked me around some, but I am getting back on my feet now.

I will be producing more content, to fight the ever-increasing restrictions on pain relief. And the lies that the researchers peddle to deny us access to safe and effective pain care.

I have been offline, because I am sick.

24/06/2025

IVIG infusion day. I spend about four hours in the chair, once a fortnight.

It rolls around quickly. Next week I start Rituxan infusions as well. I have an infusion every week, for the next four weeks 😊

13/05/2025

I haven’t been online for months. Buried in work. All I do is work! Every upright hour…work. And much of it is volunteer work, advocating for people who live with painful, progressive, incurable illnesses.


I don’t have enough functional hours to have actual fun…but I realise this has to change.

So I hauled out my camera and my old macro lens.

I used to love photography. Landscapes were my thing…preferably hiking a few kms up a mountain and then photographing the view. Obviously, that hasn’t been possible for many, many, years…so…I leaned into macro.

Flies are gross. They repulse me. But goes to show that all things can be beautiful, if you see them in the right light.

23/03/2025

03/02/2025

Now for something completely different…Bodie says “Hi”

I’m very lucky. This is the face that is very often right next to me. He makes me laugh often. Always an upside 💜

21/11/2024

I have the flu so I’m stressed rising my steroids. 50mg of prednisone daily.

And yet, I am flaring. On 50mg!

My eyes are inflamed, light sensitive and very painful. Malar rash on my face. Joints burning and aching.

This is . Much more than “just” a joint disease.

I’m going to have to spend a few hours in a darkened room until my eyes improve. No screens. Too painful.

Very hard to work with my eyes closed 😊

17/11/2024

Update...my neurologist emailed me and my dose will b increased to the maximum dose.

More importantly, I've had two nights in a row, of six hours sleep in a row. And I'm now a different person.

And I am a different person.

15/11/2024

TRIGGER WARNING - suicidal ideation

I have been very quiet, not doing much, due to severe pain. This is my latest substack, it explains everything.

Note, a few hours ago I received an email from my neurologist. He has upped my IVIG dose to the maximum, and so Tuesday's infusion may help. If not, he will return me to my original dose.

So I have hope. And I can hang on.

If you've been in a similar situation, please post below. Most of my work now is in chronic pain advocacy. And while this pain crisis is due to CIDP, RA is excruciatingly painful as well. And it could just has easily have been that. I continue to fight to get people to realise that its not 'just arthritis'. That its a serious, extremely painful, systemic, autoimmune disease.

Severe pain is a medical emergency. It does not matter whether that pain is acute or chronic. Severe pain is an emergency and must be treated as such.

22/10/2024

Infusion day again. Every two weeks now. IVIG for CIDP.

I get my infusion at a cancer centre, most people here have cancer and are reviving chemo infusions.

I am constant amazing st the much higher standard of care I receive here. Especially in regards to pain management. The duct is and nurses are used to caring for people who are I. Severe pain. And they are quick to treat it. Opioids are seen as a godsend. Albeit one that requires careful management.

Today I told them the lower dose is not working. The doctor was empathetic and told me we need to give it more time.

And then he says he would increase my opioid dose for a few weeks. Just to get me “over the hump” until the IVIG dose can be adjusted.

Blew my mind.

I almost burst into tears.

To be believed. To be treated with compassion and understanding. To have my
Pain accepted as being severe. NOT being told I was just anxious and depressed and that’s why my pain FEELS severe

I’m nit anxious or depressed. My pain doesn’t feel severe it IS severe.

This doctor is amazing. The infusion centre is amazing.

Again I say, all people living with severe pain should be treated this way. All people with chronic illnesses should be treated this way. Instead of being doubted, accused of drug seeking or malingering.

08/10/2024

IVIG infusion day. Rolls around very quickly. And now I’ll be going fortnightly. That’s a lot of time in this chair. But it should give me more upright hours in the whole. Here’s hoping 😁

07/10/2024

Finally set up my treadmill! Yes, I know, it’s taken 3 months :). But the removalists lost the bolts, so it took some time to find replacements. And the move here was such a total s**t show, and literally nearly killed me.

But anyway. That’s not important. What’s important is that i can workout on the treadmill again.

Walking is very painful, but it’s important for my neuromuscular disease. It’s also important for my arthritis, and most of all it’s important because I love being active. I would never choose a sedentary life. Never.

The best way to get your heart rate up if you can’t jog, is to walk an incline. I can’t do that in the real world, too risky. But I can do it on a treadmill, at home.

I did 20 minutes today, got my heart rate into the cardio zone for about 10 of them. And that’s a very good start. Good enough for me :)