Arthritic Chick- the truth about life with Rheumatoid Arthritis

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Arthritic Chick- the truth about life with Rheumatoid Arthritis Chick with Rheumatoid Arthritis whos tired of people misunderstanding RA! My blog is about the reality of living with RA, and trying to do it in a positive way
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So who am I? I’m Arthritic Chick! Fifteen years ago my hands started to hurt, then my feet, then my knees…until almost every joint in my body ached. Even my ribs. Who’d have thought that ribs were joints, eh??? Arthritic Chick (www.arthriticchick.com) is a reality check about life with Rheumatoid Arthritis and how it affects us day to day...the good, the bad and the ugly. And trying to get thru it all with a smile.

People with OUD can have hydromorphone long term…but people who live with severe, disabling, intractable, chronic pain c...
30/04/2024

People with OUD can have hydromorphone long term…but people who live with severe, disabling, intractable, chronic pain cannot!

Why?

Lies and disinformation. Please read my substack to find out more.

Diet has always been a controversial topic in RA.  And all autoimmune diseases, for that matter. For me, yes, diet has a...
19/04/2024

Diet has always been a controversial topic in RA. And all autoimmune diseases, for that matter.

For me, yes, diet has an effect. But its 100% individual. I do better with a high protein diet. A friend of mine does better on a high carb diet. It's trial and error.

The science finds that the Mediterranean diet is the best for lowering inflammation and therefore best diet to follow if you have RA.

I've always been interested in nutrition,so I've always found the impact of diet on disease a fascinating topic. This article is a good round-up of the latest evidence.

https://www.healio.com/news/rheumatology/20240418/qa-no-onesizefitsall-approach-to-diet-in-rheumatoid-Arthritic Chick- the truth about life with Rheumatoid Arthritis

Patients with rheumatoid arthritis may be able to tame their disease progression and inflammation by adopting elements of the Mediterranean diet such as lowering sugar intake and incorporating protein in the form of fish or plant-based sources.

I read a lot of scientific research related to RA, arthritis and chronic pain.  Initially, this study made me laugh, cos...
16/04/2024

I read a lot of scientific research related to RA, arthritis and chronic pain. Initially, this study made me laugh, cos it seemed to be stating the obvious:

“Among patients with rheumatoid arthritis (RA), the presence of more tender vs swollen joints was linked to worse functional outcomes, according to study results published in ACR Open Rheumatology.”

But then I realised it was tender joints vs swollen joints. And many rheums tend to only care about swelling, believing that swelling indicates active inflammation, but not so much with ‘tender’ joints.

I know that my rheumy often looks for swelling and doesn’t really want to discuss pain, because he doesn’t treat pain. He would often imply that if there was no swelling, then it was NOT RA that was causing the pain (I beg to differ). And he would try and blame fibro, or imply it was all in my head.

This study is great, in that it shows that tender joints, even in the absence of swelling, indicated active disease and lead to worse “functional outcomes”. i.e. disability and lower quality of life. And the study states that these people might need closer monitoring and more intensive treatment, to improve those functional outcomes. That has to be a good thing.

In short, rheums need to pay as much attention to tender joints as swollen joints. So I think this is a really useful study.

Do you find rheums pay more attention to swelling rather than pain?

Researchers assessed the effects of differences in tender vs swollen joint counts on functional outcomes among patients with rheumatoid arthritis.

A bunch of Aussie researchers are cashing in on the Four Corners article on chronic pain patients, and how many procedur...
15/04/2024

A bunch of Aussie researchers are cashing in on the Four Corners article on chronic pain patients, and how many procedures are performed necessarily or when not indicated. But these researchers have a long history of misrepresenting their own data, and publishing cherry-picked data for a pre-determined conclusion.

Which has caused great patient harm. This is how:

https://arthriticchick.substack.com/p/correcting-the-record-spinal-cord

Has your pain managemnet doctor forced you to have interventional procedures or else they will no longer prescribe your ...
12/04/2024

Has your pain managemnet doctor forced you to have interventional procedures or else they will no longer prescribe your pain medicines? Or have they cut you off your medicines and tried to offer you a spinal cord stimulator instead?

These are lucrative procedures. I have been blackmailed into having radiofrequency ablations or lose my opioids. I refused a spinal cord stimulator and my pain doctor discharged me from his practice.

I refused to be a cash cow, so he refuesd to treat me.

have you had a simlar experience? Let me know!

Yesterday I painted. Yea, after painting the whole house at my last place, I said “never again!”But after all that pract...
27/03/2024

Yesterday I painted. Yea, after painting the whole house at my last place, I said “never again!”

But after all that practice, I’m actually pretty good at it. Efficient even.

Everything is about sprucing the house up. And focusing on moving on. We’re all pitching in and obviously hoping for the best possible price.

I’ll be very sad to leave here. But happy to say “Bye!” To the stairs. My means I can’t climb them anymore and I’m often bunking in the couch due stairs cos I just can’t get upstairs at the end of the day.

So it’s time!

Unfortunate I haven’t felt to usual boost from my treatment.

But I have done a LOT. I think it’s the IVIG that allowed me to get so much done yesterday.

Very thankful I now have access to this treatment. Fingers crossed it will get me through!!

Infusion day!  IVIG.  Infusion number 3You cna’t see my laptop in the photo, but I’m working, doing SEO maintenance on m...
26/03/2024

Infusion day! IVIG. Infusion number 3

You cna’t see my laptop in the photo, but I’m working, doing SEO maintenance on my pigment business website. I got a lot done today. I worked hard. I always work hard.

But the BIG news is that, in light of my recent fall down the last three steps of my flight of stairs, I have put my house on the market.

This is very sad.

This is very stressful.

This is necessary.

I am doing as much as I can myself, to save money. I am painting, I painted a whole house once, it took me five years, but i got there.

I will move to a beautiful, single level house. And I will be very happy there.

Because i choose to find the positives.

I have lost SO much. Friends, family, career, money, the ability to walk.

But I HAVE so much to be grateful for too.

It’s not always easy to find the positives. But they are there. I am grateful everyday for my kids, who area healthy and happy. And close to me. And my dogs. And my mother. My father is gone from this life, but he is never far from me either. He is still here in my heart and in my thoughts…he taught me many things, and because of that, he is always here.

I am rambling. Moving is exciting and scary. And work.

But we will get there. So much will unfold over coming weeks. I’m going to make it an adventure. Ride this wave and hope we land safely 💜💜💜


This month my IVIG only lasted about 10 days.  That’s a huge disappointment.  Last month, the first month, it lasted 2 w...
13/03/2024

This month my IVIG only lasted about 10 days. That’s a huge disappointment. Last month, the first month, it lasted 2 weeks. On reflection, I had a double dose in the first month. A loading dose. Perhaps that’s why it lasted longer. I was hoping each month would last longer and longer, until it lasted the whole 4 weeks. That may still happen. Feels less likely though.

A few days ago I had a fall. My leg muscles are so weak now, that sometimes I fall. I was trying to get downstairs at 3am in the morning. Pain was horrible, too much to cope with. I needed my pain meds. I slipped and my leg collapsed on the last three stairs.

I fell.

Im fine. I didn’t do any damage. Just scared myself.

and now I have to accept that this house is not safe for me anymore. I need to move to a single level house.. I don’t want to leave here. But I have to.

Another loss.

I will miss the pond most of all. I walk the dogs around the pond, and sometimes I jog. I did that today. My jog is a shuffle, it’s hard for me to lift my legs. And there are people who walk faster than I ‘jog’. But I get my heart rate up, and I get the endorphins flowing. As I get my positive attitude back while shuffling around the pond.

Hard cardio exercise is the best stress relief for me. I can usually find a way. There’s a price, but htere’s also a huge benefit.

My doctors assume I am don’t exercise because I’m afraid of pain.

Never assume

Yesterday was IVIG day. My second infusion.Last time I thought it reduced pain for around two weeks post infusion. Then ...
27/02/2024

Yesterday was IVIG day. My second infusion.

Last time I thought it reduced pain for around two weeks post infusion. Then the pain returned, and with a vengeance. It didn't help with muscle weakness and hand function tho. Still, I was, very hopeful.

This morning I woke at 3am, from nausea, not pain. It's a side effect that will wane.

Pain has reduced from an 8 throughout my arms and legs, to a 6. And only in my hands and feet.

It's incredible!

Severe pain to moderate pain is a HUGE deal. TBH I really needed the break. Constant, severe pain is a horrible way to live. Waking up at 4am every day in 8+ pain is a horrible way to live. For years and years on end.

The last 4 months have been amongst the hardest of my life. Pain, muscle weakness, losing muscle coordination and function, needing a wheelchair fill time... It's been a lot. Not to mention the biopsy that got infected, the sepsis, the chronic wound I still manage daily.

The biopsy was worth it because it showed undeniable CIDP. Which gave me access to IVIG.

It took 8 years to get the correct diagnosis, but I am on the right treatment now. And it's helping.

It's a shame that not all docs are like my current neurologist. But better late than never.

I know it's hard, but when you know something is wrong and your doc refuses to listen, keep looking until you find a doc who will. I had given up but my GP convinced me to try one more neurologist. I'm forever grateful to her, and of course, my neuro.

Walked the dogs!!!I’m all sweaty and exhausted. And I needed a crutch. But I walked the dogs. And I’m happy 💜😁
20/02/2024

Walked the dogs!!!

I’m all sweaty and exhausted. And I needed a crutch.

But I walked the dogs. And I’m happy 💜😁

It took 8 years and 4 neurologists to get my CIDP diagnosed. CIDP is a rare disease, I get that it may not have been top...
11/02/2024

It took 8 years and 4 neurologists to get my CIDP diagnosed.

CIDP is a rare disease, I get that it may not have been top of mind

BUT

Three neurologists judged me as a hysterical, drug seeking malingerer, rather than following up test that clearly indicated a pathological disease proves…not a psychological one.

This is because I am female, fat, have ‘chronic pain’ and worst of all, I am on long term opioid therapy.

Image: white image with black writing which says : What if they had done their jobs well and NOT dismissed me as hysterical, malingering, a ‘chronic painer’ or a drug seeker’

When doctors decide to disbelieve you, there is nothing you can do.

Unbelievably a family member told me I ‘should have been more assertive, youre too polite and you look too well!’

So…it’s my fault…lol

Bruise from string slap. Archery. Very painful!!! If I had an over sensitised nervous system…would I be able to tolerate...
11/02/2024

Bruise from string slap. Archery.

Very painful!!!

If I had an over sensitised nervous system…would I be able to tolerate this????

Clearly no.

I love archery. I love to shoot. Sometimes I only shoot six arrows..,and go home. Because my pain and muscle weakness is too severe.

I always try.

I do not have an over sensitised nervous system.

I do not have a low pain tolerance.

Stop judging people who live with severe, disabling pain.

Stop denying us pain care.

I take my opioids and go to the range. 90% of the time I enjoy my shoot. Sometimes the pain meds aren’t enough.

I try.

I go home.

I fu***ng tried.

I am getting better at navigating the world in my wheelchair.  It’s not easy. But it’s getting easier. It’s still hard e...
09/02/2024

I am getting better at navigating the world in my wheelchair.

It’s not easy. But it’s getting easier.

It’s still hard emotionally to know I can no longer walk these distances. But i am grateful for the wheelchair and power assist.

The world is not accessible. And when you’re in a chair, people either STARE as if you’re an alien life form, OR refuse to make eye contact or acknowledge that you exist. It’s a bizarre, new way to view the world.

On the upside, a lot of retail workers are wonderfully helpful. Shopping is hard in a wheelchair. I’m still figuring out ways to carry things I need to buy. But a lot of retail worker have gone out of their way to help and that has gone a long way to restore my faith in human kindness.

Yesterday morning I saw my GP for pain medications.  The week before, I was three days too early. MY bad, I miscounted t...
09/02/2024

Yesterday morning I saw my GP for pain medications. The week before, I was three days too early. MY bad, I miscounted the days. But the rules are so stringent that someone with no history of abuse or misuse can’t get their script 3 days early. So I had to come back, for another long appointment. This is not the fortnight to cost me extra!

My GP assured me she would continue to prescribe and what the other GP told me was not true.

She also admitted that she wished I could taper to a lower dose. She asked me to consider it while reassuring me that she will never force me. That she is only there to help.

She sees me as a ‘legacy patient’ who was unfairly given bad medication that i am now dependent on.

I reminded her I only take these medications for pain. I am not dependent for any reason there than constant, severe pain. She was kind, but I could tell she does not really believe or understand that.

She believes implicitly the ‘party line’ that has been taught to doctors. I guess that’s understandable. But the worst part is that she does not initiate opioid therapy. So I’m ok, she’ll keep prescribing for me, and people like me. But peope who live with severe, disabling pain will not get an opioid Rx.

Which is why I continue to do my advocacy work. I am very limited by disabling, but I can’t stop. Too many people are being made to suffer unecessarily, by false information.

We have to correct the record.

01/02/2024

Over the years I have learned a lot about arthritis, all kinds. I know the most about inflammatory arthritis, but a fair bit about osteo as well.

I also know truckloads about pain.

are there any topics you want to know about? Any articles I can research and write? Or any questions you simply would like answered?

fire away :)

Last night’s headache continued all night. Very little sleep, it was bad enough to keep me awake. And keep me pretty d**...
01/02/2024

Last night’s headache continued all night. Very little sleep, it was bad enough to keep me awake. And keep me pretty d***y all day today.

I rested. For once.

Two reasons why. Two weeks ago I tried to confide in an old friend from high school. She told me to “be more positive” and cut me dead. I should have known better.

And a few days ago I received a message from a person in my pain advocacy group. Telling me I clearly have no idea about pain, and basically rubbishing my advocacy work.

I feel pretty damn stupid. I have spent 15-20 hours a week on advocacy. To stop forced tapers. I have learned, I have schmoozed, I have taken the s**t that people in power give me. It’s too late to restore my life. I don’t want this happening to others.

But people do not like me. They make that very clear.

I feel very stupid for spending so much time trying to change things for people who can’t stand me.

Story of my life, really.

So I am recuperating. I am sick. I am very sick. A diagnosis does change things…even *I* feel justified, at last, in taking a day to recuperate from IVIG. Next month should not be like this, because I was fine after the first day. Just mild symptoms. But today was rough.

Tomorrow I have my GP for pain meds and the plastics clinic in the afternoon. So another long day, filled with medical appointments.

So I won’t get any work done tomorrow either.

I have a $5000 bill I need to pay soon. Im an idiot for not working on my business, for not spending my time making money.

My bad. I have done too much work to stop. I have woken up a few people to the difference between primary and secondary pain. And that’s my ‘thing’. And there is no difference between cancer pain and non cancer pain..it’s all secondary pain. I’ve made ground there too. And there’s more…it’s all on my website. But I am taking a break. I am focussing on my heath. And making money. I’m selling what i can sell, I’ll probably have to sell my car. I am an idiot. Ive had my priorities all wrong…and all people do is hate on me or take my work and claim it was theirs.

I’d rather be dumb than be an as**at. Uggh. Im rambling.

Everything will be OK

In bed by 7pm. I got home around 3:30pm. Shorter day today. But the treatment knocked me around more. I guess two days r...
31/01/2024

In bed by 7pm. I got home around 3:30pm. Shorter day today. But the treatment knocked me around more. I guess two days running is a lot. I have a headache and some nausea. And just feel generally crappy.

But next month will only be one day. That was a loading dose.

I just want my legs back. I want to be able to lift them and move them and have them do what I want. I want to walk. I want to jog. Arthritis was just pain. Up to a point if I could deal with the pain, I could do the thing. And mostly I could do the thing. When I needed to.

This is different. The pain is worse. But the weakness in my limbs is not something you can push through. It’s not possible. They just don’t work.

So I’m forgetting all about it. And rediscovering crosswords and puzzles. Take my mind off things. Rest. Escape.

Tomorrow is an empty day. But Friday is full of medical appts.

Rest now.

Day 2 of IVIG infusion. It should be quicker today.  I gave t gad any bad side effects, just a bit of light headedness a...
31/01/2024

Day 2 of IVIG infusion. It should be quicker today.

I gave t gad any bad side effects, just a bit of light headedness and feeling hot sometimes. I crashed hard last night, but slept well.

So far, so very good.

It’s IVIG day. Infusion has been running about a two hours. About two more to go. It took six tries to get the IV in so ...
30/01/2024

It’s IVIG day. Infusion has been running about a two hours. About two more to go.

It took six tries to get the IV in so that took a while.

But I’m up to the max rate now, so that’s good. Feeling a bit lightheaded and hot. But otherwise fine.

The nurses are lovely. Excellent care. But I can’t wait to get home.

So tired. But the recliner is comfy. And after I’ve finished installing some website stuff I might have a little nap.

Happy to finally be starting treatment. Fingers permanently crossed hoping I get some of my life back.

These orders are late. I usually ship and day. It’s my thing. Point of difference. My USP. Filling these orders took twi...
27/01/2024

These orders are late. I usually ship and day. It’s my thing. Point of difference. My USP.

Filling these orders took twice my usual time. I needed a lot of rest breaks. I am very worried that I won’t be able to work at all anymore.

Currently I have two functional hours a day.

IVIG on Tuesday.

If anyone has any experiences Roth IVIG I’d love to hear them. I’m in very bad shape physical and I am feeling depressed.

Why do I love dogs?They don’t care. You give them love, they give you love. That simple. They don’t judge. They don’t le...
23/01/2024

Why do I love dogs?

They don’t care. You give them love, they give you love. That simple.

They don’t judge. They don’t lecture. They don’t give advice. They dint bitch. They don’t snark. They don’t compete. They don’t live in The past. They don’t hate.

They just love. They are always in the moment. This. Moment. Now.

And they are good.

And tonight, again, the pain in my muscles will go all night long. I’ll steal 2-3 hours of sleep and I’ll dose a few 10 or 20 minute slips.

The pain will stop me from sleeping.

And the doctors will keep telling me to ‘just get some sleep’.

But my dogs? Bodie? He’ll just be there. All night.

He’ll be close. Hel’l let me rub his belly to take my mind off the pain. He’ll let me run my fingers through his soft fur when I can’t take the pain anymore. He’ll snuggle close or back off…but never too far. He’ll be here. Quietly. Gently. Truly.

He’ll be here. Until morning.

Until I’m allowed to take my pain meds.

When I leave the house now, I need my wheelchair. I can walk…about twenty paces. Or so. I have toughed it out for so man...
23/01/2024

When I leave the house now, I need my wheelchair. I can walk…about twenty paces. Or so.

I have toughed it out for so many years. Walking hurts. Standing hurts. Lying down hurts…but less.

Putting weight and gravity on feet…hurts. Walking on petrol doused and lit alight feet…hurts

Yet it’s not ok to use a wheelchair for pain.

I felt I had to tough it out because the people who were supposed to care about me told me to.

Don’t use that. Don’t be weak. Don’t take the easy way out. Be strong!!!

They had no idea what I was dealing with.

And I WAS WEAK! I should have told them to RAM it!!!

Now? I have muscle weakness. My legs don’t do what my brain says. And that’s better. It’s allowed.

I needed my biopsy results and my neurologist telling me “it’s ok”.

Why did I need permission??? Why didnt people want the best for me? Why didn’t they BELIEVE me?

Cos they didn’t give a toss about me.

I’m strong. I know it. Don’t care who believes or doesn’t.

I’ve suffered. I finally decided to try to ease some suffering.

But this is the truth.

The world is not accessible - big picture. The pain is easier sometimes.

My power assist is crap! I have to self propel on the concrete. It’s only good inside the hospital, or in shopping centre. In the real world? No fu***ng way can I get where I’m going alone.

And I’m alone.

No one filming me. No one opening that door, reaching that button or shelf.

Thing is, the wheelchair is harder in so many ways. The world is not accessible.

I have to self propel. I still have upper body strength. For now. More important, I have killer instinct. Determination.

But it does NOT MATTER how strong, how determined, how much you want it…when a disease process is driving the car.

Now I have proof I am sick. Why did I need it?

Why. Didn’t. They. Believe. Me.

Why didn’t they want what’s best for me? Why didn’t they accept me on wheels.

I think people have forgotten that disability means…disability. That there’s a f**k load of s**t I can’t do anymore.

Like walk.

Like live a moment without severe pain.

Like be accepted as a person who deserves help. And support. And love.

Plastics clinic to check on my wound healing. It’s an hour behind so far. The waiting room is packed so it’s going to be...
23/01/2024

Plastics clinic to check on my wound healing. It’s an hour behind so far. The waiting room is packed so it’s going to be a few more hours before I’m seen.

I am grateful. But I’m also in a lot of pain, with a sick dog at home.

Being sick is not fun. Acute issues, chronic issues. Hanging at the hospital, with a tonne of people, and most aren’t masked.

I am masked, of course. But I wish the dude coughing his guts up over in the corner would mask up!

People are so rude. And selfish. If you’re sick, wear a mask! Don’t spread whatever it is you have! Did people learn nothing???

Yeh…I’m cranky. Pain will do that.

There’s not much I wouldn’t give to be healthy.

This is Miss Zarlee. She’s the Chicklets dog. She does not do well on her own, so she comes here for doggy daycare when ...
23/01/2024

This is Miss Zarlee. She’s the Chicklets dog. She does not do well on her own, so she comes here for doggy daycare when the Chicklet is working.

But she is not well. Not herself. She’s not walking properly and is so exhausted…she has slept all morning. She doesn’t want to go for a walk. I’m trying to get her a vet appt. Something is wrong.

And today? Completely unable. No cute anecdote. No silver lining. No toxic positivity either. Truth. Agony. Suffering. L...
22/01/2024

And today? Completely unable. No cute anecdote. No silver lining.

No toxic positivity either. Truth.

Agony. Suffering. Let 2 customers down. sick. Nauseous. Pain. All day.

Tomorrow.

Assarrgghhhh I am sick of this boot. But it’s keeping my ankle still so I don’t tip my stitches. It’s hot. It’s uncomfor...
21/01/2024

Assarrgghhhh I am sick of this boot.

But it’s keeping my ankle still so I don’t tip my stitches. It’s hot. It’s uncomfortable. It’s been weeks.

But it’s keeping my ankle still so I don’t rip my stitches. If I rip my stitches they will NOT sew it back up. And it will be part of my daily life. For a very long time.

So I’m wearing the boot.

Not complaining. Explaining.

Being sick is hard. It would not be so hard if healthy people learned about being sick…and were kind.

Some people are not kind because the just don’t know. So please…know.

Be kind. 💜

Yesterday I went for a walk. I took Mr Bodie out for 15 minutes. We walked slowly to the pond. And he sniffed all his fa...
21/01/2024

Yesterday I went for a walk. I took Mr Bodie out for 15 minutes. We walked slowly to the pond. And he sniffed all his favourite places and got the good sniffs. Yes, he’d LOVE to run. But he gets a lot of joy and enrichment from slow walks and sniffing EVERYTHING!

It was fun for us both. It’s was too much for me. Today my legs don’t work, they won’t do what my brain tells them to. And they hurt. Quite a lot.

I did some work this morning. And now it’s play time. I’ve always wanted to play keys. I got this tiny mini midi keyboard years ago. Never got the time. Work, work, work.

All I do is work. Chronic pain advocacy. Writing. Taking to people. Reading. Learning. Responding. Rebutting. Educating.

But today? I’m learning keys. There’s a free course by Melodics. 14 days. Ive done day 1 to 5 today. It’s fun. Pure fun.

Whatever you’re doing today, make sure you make time for fun. I need to do a lot more of that. I can’t walk. I can’t leave the house. But I have so much interesting stuff to do. To learn. To enjoy.

Have fun 💜

Why?I’m in bed at 7pm because I used my pain meds so I could work. Which means I will lie awake in strong pain all night...
20/01/2024

Why?

I’m in bed at 7pm because I used my pain meds so I could work.

Which means I will lie awake in strong pain all night. ALL night. EVERY night. Forever. Fur the rest of my life.

I have family to care for. I need to work.

When I had 20mg more of oxycodone I was able to work, and sleep AND take care of my family . I supported my family. We did not live in poverty. And I did not suffer. I was fit, ran 5km daily.

Then my doctors cut my dose in half, to save me from addiction.

Please think about that.

Im still working in the perfect vindaloo paste. Omg I always wanted to go to India!  It was a place my ex husband and I ...
20/01/2024

Im still working in the perfect vindaloo paste.

Omg I always wanted to go to India! It was a place my ex husband and I were going to visit! We LOVE curry. It drove us to learn about India, the people, the culture, the country. We wanted to travel, to visit there. To sample the culture and the amazing food.

I will never do that. Sick as it may sound, I hope he will (if he still wants to). I set him free so as not to be a noose around his neck.

I can’t visit India. But I can work on the perfect vindaloo paste. I can watch YouTube and read blogs and learn and live vicariously.

I’ll never go to India. That can be a tragedy.

OR

I can travel thru others’ experiences, I can watch and learn and grow. I CAN choose to have a good life while trapped in this body and trapped in this house.

I choose to be happy.

I choose to focus on what I can do. And I can learn how to make amazing Vindaloo.

My life is very hard. I’m not minimising that. NOT for a second.

But I need to find ways to be happy.

I can make vindaloo.

My dressing came off overnight. I slept without the boot. I was told to, but I wanted to be extra safe, and keep it on. ...
19/01/2024

My dressing came off overnight. I slept without the boot. I was told to, but I wanted to be extra safe, and keep it on. Then I took it off, and my dressings came off.

The stitches are still holding. But there is quite some swelling and a lot of redness. I need to keep the swelling down. I’ve wrapped it firmly, and I need to go back to keeping the leg elevated.

I’ve been doing a bit more each day. The HARDEST thing for me to do is…nothing.

But I have to. Do nothing.

Rest the leg. Use the wheelchair. Stop working. Relax. Do fun stuff. Remember that? Fun?

Give my body the chance to heal.

Stop working so damn hard.

Let other people fight the good fight for a little while. I’m not essential. They are more than capable.

I am too unwell. It’s ok to rest.

Thankyou for your kindness and support. My body is fighting on so many fronts right now. Kindness makes the world of difference.

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