Comments on: Ain’t Just A River In Egypt

By: Wren

Wren — Mon, 30 Nov 2009 20:39:31 +0000

It’s so hard to adjust to the limitations RA imposes. I think perhaps one reason is that those limitations change so frequently. In my own case, one day I can go to the gym and use my hands to grip, push and pull — but the next day, or for a week or more, I can’t. Same with other joints. It makes accepting the disability extremely hard when we can sometimes still do things the way we used to.

I’m with SB. Take a deep breath, wear those assistive aids and keep making your lovely music for as long as you can. The world needs your courage and your talent.

By: Reality « ∞ itis

Reality « ∞ itis — Mon, 30 Nov 2009 11:28:00 +0000

[...] Sometimes I want to live on a houseboat in Egypt! [...]

By: RA Superb*tch

RA Superb*tch — Wed, 11 Nov 2009 18:01:19 +0000

It is funny that you just commented my post b/c I honestly had my husband read this denial post this a.m. Like you, I can’t seem to stop cycling through the stages of grief. Acceptance feels the same as giving up. People tell me it is not, but…I guess I’m slow that way.

Your song, “Don’t Let Me” is gorgeous. I cried the first time I heard it…a month or so ago. I couldn’t remember the name of your blog after that. I’m glad you found me on RA Guy’s page so I could hear your other music. You are a very talented musician…If you need to, wear the devices, but please don’t stop making music.

By: Helen

Helen — Wed, 04 Nov 2009 16:59:24 +0000

I’m guilty of the same. Sometimes I think the reason I run myself ragged and say yes to absolutely everything is just so that I can ignore, or pretend to ignore, the fact that I have RA. You would think after 24 years I’d have learned to acknowledge it.

I played piano for many years as a child. When I was 10 or 11 and started acquiring a great deal of permanent damage to my wrists, my rheumatologist asked me to stop. I think, in some ways, I’m still trying to make up for that.

At the time, though, there weren’t the amazing medications you and I now both benefit from. I just had Naproxen – I don’t think I was even on methotrexate yet. If I’d had those drugs, maybe I would have been able to continue.

I think it’s important that you continue to play, but yes, maybe cut back on the high-pressure performances so that, when you have an off day, you aren’t forced to do something that will just cause more pain.