Sunday, 2 August 2015

Real Hands, Real People



Gail's Hands:

Ring splints



Resting splints








Loyal pet Dolly


  1. Thanks for informing and sharing the view of the patient. It is hard to understand without patient stories. You are making trails for others to follow!

    1. I really appreciate my friends who shared their stories. These are not usually topics of conversation so I wanted people to get a glimpse of what it's like.

  2. Thank you all for sharing these personal stories. So much goes into deciding whether or not to undergo a treatment or surgery. There's a lot to balance and the best doctors need to understand that only a team based approach can figure out if what course of treatment is going to work. Dismissing you out of hand by literally putting their hand up to stop questions? Wow, time to move on. Again, thanks for sharing. Goes to show these experiences cut across specialties and diagnoses.

    1. Thanks Isabel. The medical system is pretty consistent in presenting problems with a common denominator to people who have to interact with it more than they want to. The details are different but overall it's easy to relate.

  3. When I saw the hand surgeon, I felt like I was part of a freak show...honestly, the male nurse looked at my hands and said, "Oh, gross!" Thank you, I know they are. Thanks for the confirmation. I bet they would love a photo of my hands hanging in their lobby with the caption "Do you want YOUR hands to look like this? This is what YOUR hands could look like without hand surgery". (gross, isn't it?) I have a friend who has r/a and lupus...her doctor told her that "she might as well get used to the idea of not having use of her hands down the road". That's comforting. I have been on r/a meds for 30 plus years. I know surgery will not help me now....not when you creep out the hand surgeon and his nurse. It's hard enough dealing with the disease much less all the comments and the other diseases that piggy back off of r/a. This was a hand surgeon who had a wonderful reputation and praises from many drs and patients. I guess we could work on some bedside manner though.

  4. Thank you for your informative blog on hands. That seems to be the part of the body that RA attacks first. I know that I probably need wrist surgery and may have to undergo that, but at my age - I don't want to undergo any surgery that can be avoided. I can still use my hands even though my very arthritic wrist is making things very difficult. I have to ask for help more often than I would like, but I think we all just learn to live with our disabilities if possible. I am very disappointed that I can no longer wear the beautiful rings that my kind husband has bought for me over the years..

    1. Thanks Judy, I saw a beautiful necklace once. It was made of rings, so I hoped I could do the same, but it didn't work for me. I too wish I could wear them.
      Maybe that's an idea for a Pinterest board :) Display the rings you love.

  5. Back in 1990, my 76 yr old father was in the hospital. I was by his bed talking to my sister and family when dad piped up "Look at her hands, that's such a shame"....adding a couple of tsks. And this when I didn't think my hands were too too bad. Big drifting...etc. Dad, you should see my hands now. Even my dad didn't know what to say about my deformities.
    My hands worked well to take care of my mom, my dad and my fiance before they passed away. Now when "I" need them, they're practically useless.

  6. It's a shame you did not happen across a good surgeon sooner in your life, and yet there is no way to tell as a patients when the right time for surgery is.
    Speaking for myself - It's hard not to notice. Every now and then I am surprised at the way my hands look when I catch a glimpse in a mirror but in real life I tend not to think about hiding them.
    A Twitter OT (@Cath_back) said this. "Example of need for effectiveness studies - hard to engage in life without your hands"