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Sunday, 2 August 2015

Real Hands, Real People

Thank to my friends for sharing stories about their hands.  I find it helpful to hear what others experience and know I am not alone.

Note: Bear in mind that some of the people speaking have had rheumatoid arthritis from before biologic drugs were discovered, and are dealing with joints that were damaged due to ineffective treatment.

Gail's Hands:
On my right hand the first knuckle is already deformed and some of the others are too but not as much as that first one, and that's a part of the recent increase in pain in my hands.  The little knuckle has been hurting while my finger is swaying even more.  Sometimes my fingers ache like crazy but that comes and goes.  Sometimes I have deep aching here and there and that comes and goes.

Ring splints

Allie:
I have the swaying of my right hand - Ulnar Drift.  I have a lot of swollen synovial tissue under the fingers on the knuckles - especially my right hand.  About a year ago - after remaining fairly stable for years - the middle knuckles on my fingers became permanently swollen and I can no longer wear my rings because I can't get them over the knuckles.  It was mainly my right hand that was affected.  But, later on - my left hand also is having changes and the middle finger on my left hand is swollen and painful.


The pain in my hands kind of comes and goes or maybe I have just become used to the pain. The night splints that the occupational therapist made for me helped a lot but after several years, I quit wearing them because I felt I didn't need them. Now, I think I probably need new splints made - especially for my right wrist.

Resting splints

Julie:
I really didn't realize how awful my hands looked until I saw a fairly recent photo of me with both of my hands in front of me.  My fingers look awful and my right wrist is all swollen.  My right wrist is so painful that I am having problems cooking.  Well - also standing on my lousy feet. I never had the sensation that the joints are moving and tugging.  I think everything on me went slowly and I just didn't notice.

I saw a hand surgeon early on in my trip with RA.  At that time, it was really my right index finger that was really bothersome.  He described the surgery he would do and said it would take 6 to 8 weeks for recovery.  Then, to this statement, he said "I will become your best friend".

I didn't like the sound of the surgery or the fact that he expected me to have many more hand surgeries - so I just passed on the entire thing.  Yes - my hand looks awful and at times is painful.

Angela:
I can't say I ever liked my hand surgeon. I respected his skill at surgery and put up with the rest. He's the one who put his hand up like a stop sign to keep me from asking questions, who told the students not to  worry if patients said that they had trouble with personal care because "they'll figure it out" (and this with a room full of Occupational Therapists beside him).
My friend saw the same doctor once and he told the woman on the other side of the curtain, "Fine, we'll go ahead and take care of your hand" then when she was gone he said to the resident - "It will never be better". She told him that she hoped he would not lie to her the same way.

Polly:
The hand surgeon I saw in 2004 wouldn’t even attempt to repair my hands because he said the surgery I would have to have is not perfected. He said as long as I can use my thumb and “pointer” finger left to use, that I would be fine unless I was in pain 24/7.  Well I am not in pain, but I can't use any of my other fingers. They’re in a fist now.

I don’t think he would have said that had it been his hands.   It's maddening how they pooh pooh it all. So he didn’t even suggest having the surgery way back then.  Now when I went to another hand surgeon this year he said it could be done but it might or might not make me more functional. It depended on whether you talked to the Dr face to face or read his clinical summary where he said it was not likely to help. I think the summary is called CYA.

I asked him also...both hands at the same time?  Yes, you’ll still be able to use a couple of your fingers...  I said you know I live alone?  have pets? That’s what rehab will help you with. We can get you  a home health aide, house cleaning help. I can't even turn on the ignition of my car without a special soldered key turner.  I walked out knowing he wasn’t really concerned about me. When I found out he told me one thing and wrote another, I knew I would live with these hands.

Loyal pet Dolly


9 comments:

  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!

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    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.

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  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.

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    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.

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  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.

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  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..

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    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.

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  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 knuckles....no 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.

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  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"

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