30 Jan 2017 – update on the update


So update on the update, I can’t get my feet into my shoes.  Slip-ins only, and even then I can’t get my fat feet in far enough!  So I’m bringing thongs/flip flops back. I’ve always been a fashion maven and trendsetter. You watch, all the cool kids will be in flip-flops next week.

I need to get darker glasses!  Even with my sunglasses on, the light is too bright.  I won’t be driving that far again until this taper is over.  I can’t see properly and my eyes are so dry and painful. Not worth the risk.

I really can’t hear.  There were small children in the waiting room and the poor receptionist couldn’t find my films.  It took several attempts and ‘I beg your pardon’ and ‘excuse mes’ to tell her I just need the report. I explained I’m having hearing problems, and she was very nice about it.  But I really hate it.  Losing my hearing is bothering me very much.

Music has always been incredibly important to me.  I can’t play guitar anymore, and my voice has changed tonally thanks to cricoarytenoid arthritis, but with my hearing loss, I’m not able to hear a lot of the details in the music, which is what I used to love.  My ex and I and our totally pretentious indy music friends used to sit around and analyse tasty little licks and riffs and drum parts, and it’s all those little details that we enjoyed.  Those are lost to me now.

And I can’t sing.  Even when I’m talking, I’m not sure if I’m yelling or talking too soft or if my volumes are appropriate.  I’m fine in one on one conversations, where there is no background noise.  But out in public, the world is just a buzz that drowns out my ability to hear individual voices.  My ears feel blocked and full of pressure. It’s not painful, but its uncomfortable.

I can’t walk far without blowing up like a balloon. I feel like Mr Staypuft the Marshmallow man.  My feet swelled after a few metres of walking and feel like the skin is going to split open. My knees are full of fluid and don’t want to bend…ditto for my wrists.  My fingers are fat and clumsy and I can’t grab anything safetly. Now that I’m home I have to elevate my feet and ice everything to try get this swelling down.

I remember when I was very, very pregnant with my son. I had pre-eclampsia and needed to be induced because my blood pressure shot up way too high. I was full of fluid then, great big beach ball shaped blob, but I could feel the fluid everywhere, all through my body.  That’s what this feels like now.  Yes, my joints are squishy but my whole body feels that way. It’s hard to describe.  Not liking it though. I’m glad this taper is going fast, because I want to start treating this stuff.  In three weeks I will be at 5mg.  Bring it on.

I doubt I’ll be able to exercise, as soon as I move, I just feel like it’s making the swelling worse.  But I’m told that exercise will make it better. So I will try, later this afternoon. See if I can do a gentle spin class, or even just ten minutes on the recumbent bike.  I won’t be able to work hard enough to get my heart rate up, but maybe moving my body will disperse some of this fluid.  I hope so.  Can only try.

But for now, its eye gels and drops, ice packs all over and elevate my feet for a while.


  1. <3 <3 <3 Gentle hugs. I totally get where you're at, RA warrior sis! At least everything you go through will show your rhuemy what you're truly dealing with. Nobody could look at those joints now and deny inflammation! I hope and pray this leads to useful analysis and the right cocktail of meds..

  2. Also, have they considered a water pill for you to help with fluid retention? It took them years to find the right one for me because any of them lower blood pressure and my BP is already naturally low. So 8f I took the other pills they’d lower my bp even further till I felt faint. But I’m on Lasix now which doesn’t do that and does help me lose fluid when it comes. It doesn’t stop the swelling flares all together but does help with symptoms. All the best.. keep blogging!


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