A Day In The Life. RA Support Group Edition Day 1

I crowd sourced some of my day in the life. Support groups are wonderful.

Polly has ideas  for a demo film:

"Someone needs to make the virtual reality rheumatoid arthritis experience - I've been wanting to do that for years.  A day in the life..from the lowest pain to highest and then add some gastro issues just for a few chuckles.."

Jill feels that her doctor does not appreciate the impact of RA: 

"I don’t think our doctors have any idea of the impact on our quality of life. We see them for such a short amount of time throughout the year and then it’s only enough time to deal with the immediate issues/concerns. I bet if we each sat down with our rheumy and talked them through a week of our lives they’d soon see things in a different light." 

Julie and John:

"We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at least one serving of a fruit or vegetable and usually more with every meal.  I really don't think we surpass seven servings a day though.

I have read that 65 to 75 is "Young" old,  75 to 85 is "Old" and 85 plus years is "Very" old."

Polly is single now:

"I feel invisible a lot of the time.  I think you don’t get much attention if you're solo."

Rosie wants a place to relax.

"Sometimes I sat in the pavilion and knitted.  I haven't found a body of water to visit but I am going to try and find one so there will be a place I can go by myself where I don't have to worry about catching anything from anyone!"

Julie has a soft spot for animals

"We were feeding a awful-looking very young raccoon that we felt sorry for.  He looked so sickly and after several days fell over in the yard.  John picked him up in a towel and put him in a box and then called animal control.  They came out and took the poor little raccoon and the officer told us that distemper was rampant in raccoon's in the area.  We both shed a tear over that sick raccoon. Thankfully, our pets are vaccinated against distemper, but the feral cats we feed aren't vaccinated against anything and now we are worried about them.  Always something to worry about."

I don't have a soft spot for all animals

At our house we are fighting the groundhog wars. The hole is blocked off now. We might have left him alone but he wanted to live right near the back door, next to the foundation.

Just sitting here I see reminders of RA in front of me, on my desktop, splints in the nightstand.

Pills under the monitor

Jills ring splints picture on my desktop

Adapted pens always near me

Resting splint worn nightly

Right angled knife - so easy for chopping

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

Splints are not Glamorous

When I was first diagnosed I saw an occupational therapist who recommended that I wear resting splints at night so that my hands and wrists would feel better in the morning.  They are quite effective for that and I have worn them for 25 years - of course they need to be replaced every few years.  To deal with the fact that plastic can make you feel very warm, even with small ventilation holes in it, I cut up cotton socks to wear as liners.  I posted these pictures of the resting splints that I use for my hands and wrists at night in my online support group.

This is the comment I got from Judy after she saw the pictures.

"Your hand/wrist splints look very much like mine.  I don't have to wear them much anymore.  I used to wear them every night.  One night, my arms got stuck together with the Velcro on each splint.  I had to have Jim help me get them separated.

I can put them all on and look like I am ready for Halloween. You should see a box in my closet - I have about every kind of splint you can think of in the box plus ace bandages.  I have all kinds of ankle wraps.  I used to go out of the house looking like some kind of a mummy with all of my wraps, splints, etc."

So that really brings home the glamour, or lack thereof, of taking care of yourself.

For my fingers I have found a more stylish and very effective alternative. Silver ring splints keep your finger joints in a good position and look like up to date and unusual jewelry. The most frequent use for them is to correct a swan neck deformity (love the RA vocabulary). I can show you a very obvious example of that, and will, but be aware that with more effective drugs and treatment you don't see fingers like this so often anymore.

So you see here the finger without the splint and then with it. Showing these pictures almost feels like stripping. Unless I am demonstrating textbook examples for medical professionals my fingers are very seldom front and center

The silver ring splints can be used for other hand problems as well (like EDS for example) and can make joints more functional.

                                                                          digisplint.com

I have read clinical studies that say that results of using splints are inconclusive. There are a few reasons for that lack of consensus. One is that people find them uncomfortable or ugly so they don't continue wearing them and leave the trial.  In my opinion the other reason is that those who run the studies would have to follow the people for many  more years than their funding would last to be able to see a difference, and would have trouble finding a control group who would agree to participate and not use anything.

We're all so individual with our autoimmune diseases.

                                                                     CafePress.com

I have more splints but not more pictures, so I will follow up with more in the future. I'm like Judy. A whole box of splints under the bed.  As they wear out. I don't throw them out, just in case.