Comments on: Shifting Focus

By: Sunita

Sunita — Mon, 17 Aug 2009 23:20:07 +0000

You write so well RA Guy. Have you ever thought of putting together a book? I think you could inspire so many people.
I’ve had to shift focus, although perhaps in a slightly different way. I used to be an experimental scientist, by which I mean I used to devise and carry out experiments in a laboratory environment. Now I can’t use my hands very well, I’ve had to reshift my focus towards jobs that don’t require manual dexterity or rushing up and down stairs. I’m now considering science policy as a job, and I do a little freelance work in science editing…but its been a difficult transition, especially when you are in a career that previously seemed so vocational.
I used to love painting and drawing. My occupational therapist gave me some foam tubing to put around my pencil, and such a simple act brought sunlight to my day. She gave me some special rubber matting material to help open jars more easily. She suggested there could be options for adapting my home for disability. It all sounds so simple, but it meant that maybe I can deal with this condition. Psycholgically, it can be hard to admit that we have a disability…its a big wall. Especially when you are young(ish)! Sometimes I thing the classic “why is this happening to me?”. I have cried buckets over it. Thankfully I still have my mind, well sort of…at least for now. And there are so many things out there that uplift the spirit (even though I’m not religious). Humour is important too I think. I always hope my medications will give me a new lease of life. I dream of abandoning my walking stick and wearing heels again!

By: Terry

Terry — Thu, 13 Aug 2009 08:06:04 +0000

By the way, it sounds like you had an awesome day.

By: Terry

Terry — Thu, 13 Aug 2009 08:03:45 +0000

I am 6 years into my journey after being highjacked by RA. It has truly been a learning experience, even today I am still learning. The main thing that has helped me is learning to listen to my body, recognizing and heading off pain and even flares before they get to severe stages.

By: Laurie

Laurie — Wed, 12 Aug 2009 15:03:26 +0000

My hero! I have spent most of yesterday and today obsessing with the fact that when I do my Advanced cardiac life support/CPR this afternoon that I will be sore from my hips to ankles from getting down on my knees to give compressions and breaths. My knuckles, fingers and wrists will be stiff from doing the compressions.My neck will be stiff from mouth to mouth(of course if the mannequin looked like George Clooney, that would make things more tolerable. Throw in the backache from sitting for 4 hours, and I look forward to a night in the hottub. I am premedicating with my usual daily aleve, 5mg of prednisone and some ultram. I am PRAYING that this year when I tell the instructors doing the checklists that I have a physical disability that they are a little more compassionate when I can’t do compressions as deep as they would like. Oh well…off to save lives for the 31st year as a nurse…someone’s gotta do it.

By: RA Guy

RA Guy — Wed, 12 Aug 2009 14:49:43 +0000

A few months back I wrote here that one of my goals was to try to separate my mental well-being from my physical well-being. I’ve worked a lot on this, and it has helped.

This time around I recognized, however, that I was still living “in a flare” or “out of a flare”, and treating life differently depending upon the circumstances. My current goal is to transcend the on/off nature of these flares as best I can…wish me luck!