The truth about living with Rheumatoid Arthritis

How I get things done…even it looks a little strange…

I made pumpkin soup in my thermoknockoff today. Pumpkin is a bitch to chop. But this is how I do it.

1. Only butternut pumpkin. It’s much softer and easier to cut.

2. I have a really good chefs knife. Heavy duty and I keep it sharp.

3. I dig it in where I want to cut and tap it with the rolling pin. Voila! Pumpkin pieces, nice and easy.


It may look weird but I have to adapt or give up. Find new ways of doing things, or give up. And it’s like that with everything I do.

I mow the grass two rows at a time. Neighbours must think I’m mad.

I do a few dishes at a time.

I have a Roomba to vacuum the floors.

I painted my house one coat of one wall at a a time. Slow. Frustratingly so.

But over time I get things done. It doesn’t mean I’m not in pain or I’m not feeling like crap. I just have to keep trying to move forward, for my own mental health. Even if it means doctors decide that I’m not sick cos there’s no way I could manage if things were as bad as I say they are. That would be their lack of vision. Not my problem. I will always try to adapt, try to find a way, and if I say I can’t, you better believe I can’t cos im in really bad shape. Not thru lack of trying.

Service Dog Training – should I keep trying?

My Service Dog trainer contacted me a few days ago. She’s back in town for the summer.  She wanted to know if I wanted to keep training.

I had given up.  Training a service dog is hard work.  It’s even harder when you have a disability yourself.  It’s harder again when you can’t walk far, you’re mostly bedridden, and you don’t have a power chair.  I had decided it was impossible.

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GP appointment, pain meds and valium and tears

My GP was stern with me.  At first.  I took my walking stick for the first time. I have been using it much more often these days, for balance reasons.  And so that people give me room. And so that people don’t give me the evil eye for occupying a seat in a crowded waiting room.

He mentioned it and I told him exactly that.  It doesn’t do jack shit for arthritis but it helps with balance and it makes people part like the red sea.  So it’s serving a valid purpose.

I complained about the state of my life.  The best day in two weeks meant that I made it to the grocery store.  Pretty shit hot, wouldn’t you say?

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Prednisone Taper – Oct 2016 no.2

This week’s update.  Again, more for me than anything else.  It’s time to start laying bets on how long it will be before I break and do a prednisone burst.

14 weeks of Xeljanz, and yesterday I tapered down to 8mg of prednisone.  It takes a few days to feel that…usually three or four.  So I wait.

Everything that was going on last week is the same this week. With the added bonus of large muscle aches.  My quads and glutes feel like I’ve done about a hundred lunges each side, and my shoulders and back ache.  But it’s not the usual joint pain, its muscle pain.  Considering I am mostly lying on the couch, this isn’t from actually using my muscles.  When I do get up and try to do something, I fatigue out very quickly. I did some dishes, after which I felt like I’d run 5km.  And by that I mean I was breathing heavy, muscle fatigued and had to lie down.  For a few hours.

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