Adapting – Customized Hard Splints

For a history on my hand issues, see this post: http://rapaleo.momswithra.org/wp/?p=147

Custom hard splints. I can cinch down everything, so nothing moves.

So, these suckers are amazing.  I have one for each hand.  They were custom made by an occupational therapist about 5 years ago, and the white plastic was heated and molded to fit my hands.  There’s cushioning that’s customized to fit between my fingers, keeping them in appropriate alignment.  My wrists can by cinched down tight to the hard plastic, so they don’t bend at all.  My only complaint is I think my thumb is opened too far, and after a while it gets uncomfortable.  That can be adjusted (remelted and moved) by an OT if I go back.  So far, I’ve only had to use these a few times, but I was so thankful that I had them when I did.

Custom hard splints. Note the cushioning between my fingers to keep them aligned.

Last view…

Custom hard splints. An adjustment I'd like in the future is to move my thumb closer the the palm of my hand.

Anybody else have these or need them sometimes?

- Lori

Adapting – Soft Hand Splints

Ok, for my hand history, see this post: http://rapaleo.momswithra.org/wp/?p=147

That post will help these splints make sense.  Here they are in all of their glory.  I know they were still making them 3-4 years ago.  This pair is pretty worn out, but that doesn’t stop me from wearing them when I need them!  If I can find out the company who makes them, I will post it in the comments.  I think they made 3 sizes.

Soft splints for wrists, hands, and keeping my middle finger aligned.

I had a certified hand therapist (slightly different than an occupational therapist) recommend these splints when I was coming off my initial diagnosis and flare and onto the calm that was Enbrel.  Because I was struggling with keeping the tendon of my middle finger from sliding off, these splints had strips that were designed to go around the ring finger (apparently more problematic for most RA patients), but we used them for my middle finger (didn’t make a middle finger version).  This made a big difference with my grab and release activities, and my tendon would stay in the right place.  These splints also significantly lock my wrists into a straight position, a comfort during a flare.  With these splints (which I still use during repetitive heavy lifting activities), and great therapy (which also included exercises, paraffin wax baths, ultrasound… yes ULTRASOUND on my #1 joint of my middle fingers, and my splints), my hands are quite functional.

Adapting – Push Up Handles

I’m finally getting to my first adaptation for my hands.  Sometimes you can find adaptations that don’t involve medical equipment (cheaper and easier to find).  This is one of those items.  One of the first things I lost (then gained back, then lost again) is the flexibility of my wrists.

My lack of wrist flexibility, worse on this right hand than my left.

Shortly after diagnosis, my job involved sitting on the floor working with preschoolers (and obviously getting up from the floor).  At the time (and I imagine a more natural way to get up) I used my hands to push up from the floor.  When my wrists didn’t bend, sometimes I would have to keep my wrists straight, make a fist, and push up on my knuckles (probably not the best thing to do and sometimes painful).  When my husband and I got married, this was still my mode of getting up.  He came up with the idea of push up handles.  It was brilliant and got me several years of easier up-downs from the floor (now more impacted by my knees than my wrists).  For around $20, push up handles are available at most sporting good stores like Dick’s Sporting Goods (http://www.dickssportinggoods.com/product/index.jsp?productId=22950666).  By the way, don’t google “Dick’s.”  It’s so NOT the sporting goods store <sigh>.

Here’s a picture of mine.  Note that I don’t need to flex my wrists.

Push Up Handles, available at most sporting goods stores, make it so you don't have to bend your wrists to get up from the floor.

There you have it, adaptation #1.  Anybody else try these?

- Lori

MomsWithRA.org

www.facebook.com/MomsWithRA

Adapting – Camping

Well, I had planned to make my first adapting post about my hands, but given the timing, I decided to talk about camping (aka, we just got back from camping in Leadville, Colorado, elevation slightly over 10,000 feet.)  This was a great trip!  Cavan got to spend time with his cousin, aunt, uncle, and grandparents, and our little puppy, Luna, got her first camping experience.

Not all of my camping experiences have been great.  My first one with my husband’s family was when Cavan was about 7 months old.  I was flaring horribly, barely walking, and not prepared for the adventure.  We had to borrow a tent, which was low to the ground, and nearly impossible for me to get in and out of.  I was challenged to lift my feet high enough to step over the door threshold, and immediately had to crouch upon entering, something I couldn’t do. I don’t remember how or if I changed my clothes the whole weekend, as I couldn’t stand up to change.  We slept on some small part inflatable/part foam mattresses, and I needed a lot of help getting up (actually, I’m surprised I’m not still stranded up there on that mattress 7 years later).  We also cooked all of our meals while up there from scratch.  That completely did me in, and I really never wanted to go camping again after that.

Camping was a big part of my husband’s growing up, and it continues to be an important time with his family.  It was important that I be able to go, but of course I was flaring bad enough for long enough that it just wasn’t a priority for me to figure out how.

My mother-in-law, about the sweetest person you’d ever meet, nudged us along.  For Christmas, she got us a giant tent.  I could completely stand up and dress myself in the tent.  It was big enough we could put a chair in there in addition to all of our other stuff, if I needed it.  There were times that lifting my feet up over the threshold was still challenging and led to tripping and pain, but with a hand held or something stable to hold onto, that was much easier.

Our tall roomy tent, able to accommodate a chair along with our mattresses, if needed.

For the next year, my mother-in-law got us an inflatable mattress.  This is the be all, end all, queen of inflatable mattresses.  It inflates tall enough that I can stand up from it.  It does take a little effort still, but I can do it on my own.

Thick mattresses. I can get up on my own.

This year, I spent 2 days preparing almost all of our food before we left.  The meat (for the group) was smoked at home ahead of time, wrapped in foil, and was easily tossed on the campfire for heating up.  Our breakfasts and lunches were prepared and put in the cooler.  They simply needed to be taken out and eaten (Paleo style breakfast skillets including sweet potatoes, onions, sausage, bacon, and seasoning and  Paleo style honey mustard chicken with various fruits, nuts, and snacky camping stuff.  I even made Paleo graham crackers to be able to partake in the smores!)

Even if you feel awful, it’s hard to not give your son the opportunity to do this in the mountains with his cousin….

Cavan scootering at 10,000 feet

Or this…

Thankful that Grandma and Grandpa took Cavan out on a kayak!

Or see this…

Turquoise Lake, Leadville, CO

Plus, everybody needs to wake up feeling cold and looking like this….

Snuggles near the fire... Luna, shivering in the cold morning

Ok, I really will get to hands soon!  Happy summer!

- Lori

Adapting – Series Intro

I had this idea about doing a series on all of the things I’ve purchased to make my life easier in the last 17 years with RA.  Then I thought, wouldn’t it be great if some other folks would chime in about what they’ve used to make life easier?  Therefore, I’m throwing this out there to the most awesome group of moms… If you’d like to make a guest blog or blogs on how you adapt or what you use to adapt to life with RA, please contact me.  Visit our facebook page (www.facebook.com/MomsWithRA) and throw out a comment or you can find my contact information here: http://momswithra.org/index.php?pr=Contact_Us.  I’m thinking it would be good to highlight one adaptation or item per article, to keep them short and sweet.  If you’d like to make more than one post, that would be fantastic!

So, in honor of starting this off, I’m going to introduce you to my hands.  I chose my hands because, let’s face it, it’s a huge struggle when your hands don’t work.  I think it’s harder than when my feet don’t work.  You can’t bathe, cut your food, open stuff, or sometimes even read a book without your hands.  So, before getting into any adaptations yet, I’m simply going to tell you what I know about my hands.

My hands!

I decided to label my joints: 1, 2, 3 (see picture).  That way we can avoid any anatomy discussions with big words like “metacarpal.”

When my RA started 17 years ago, my hands and feet were the first things to get bad.  In particular “Joints 1″ below both of my middle fingers were a mess.  They got so swollen that they were almost black (like a dark purple bruise).  The tendon was no longer able to run its appropriate route across the joint and would slide off to one side.  When this happened, my fingers would bend significantly, and I couldn’t even come close to straightening them.  This could last for days.  This happened frequently with grasp and release activities like grocery shopping.  It was extremely painful and frustrating.

My wrists were also a challenge, and I lost some joint space in places in my wrists, causing pain with bending my wrists.  I lost some flex and bend in both wrists rather immediately.  This made it challenging to push up when getting up from the floor, a challenge because I was working in a preschool.  I also struggled to turn the ignition key in my car or get the gas cap off.  There were times I had to ask for help at the gas station!

The base on my thumb (Joint 1)  was also terribly painful on both hands.  Although I can’t say it lost function, the pain was rather extreme, and slowed me down or stopped me from typing and grasping things.

I never had significant issues with any of my #3 Joints.  My #2 Joints were pretty mild in my early onset RA.

After 3 1/2 years or so, I started Enbrel in 1999.  There was notable improvement in my hands within 45 minutes of my first shot.  I would have thought it was in my head, but within 3 hours, I was able to alternate feet on the stairs, something I hadn’t been able to do in a long time. I started occupational therapy and was able to stabilize my #1 Joints on both my middle fingers.  The OT (occupational therapist) I worked with stated that my disease course was unusual in my hands.  Most people’s fingers start deforming by all turning out toward the pinky.  My pinkies and ring fingers were turning that direction, but my middle and index fingers were deviating toward my thumb.  My wrist pain disappeared, as did issues with my thumbs with the start of Enbrel.  I was very stable on Enbrel alone until 2005.

In 2005, I started a years-long flare after the birth of my son.  I had mild issues return to my #3 Joints and mild-moderate in my #2 Joints, but my most significant was my #2 Joint in my right index finger.  That joint became severe enough that the bursa (https://en.wikipedia.org/wiki/Synovial_bursa) sac popped out of the joint and was sitting on the outside, just under the skin.  It was a rather large lump on my finger.  I was fortunate, however, as I was told my finger would have been significantly deformed had it not popped out.  As my flare started to resolve around 2011, the bursa worked its way back in, leaving some loose skin, as all my #2 Joints now seem to have.  I still had no issues with my #3 Joints.

Despite no active RA currently in my #1 Joints below my middle fingers, they remain slightly swollen and thick-feeling under the skin.  This appears to be due to permanent tissue damage from the extreme swelling I had 17 years ago.  I have no pain there.  The tendon is stable.  I saw a hand surgeon around 2009 (at the insistence of my rheumy, concerned about my bursa).  He thought my hands looked in excellent condition for how long I had RA.  I do have some permanent joint erosions in Joints 1 on both middle fingers.  They look like tiny little cracks on xray.  They don’t appear to have grown since my initial xrays back in 1999, despite my 5-6 year flare.  Hooray Enbrel!  My wrists occasionally give me trouble, but it appears as much related to typing as RA.  I rarely have pain in them, but when I do, it’s severe and completely locks my wrists.

Yes, those are my real fingernails.  They grow wickedly fast, despite the fact that I never shape or do anything to them. I get a lot of comments about how long they are.

Ok, I think that’s everything there is to know about my hands.  My next posts will be talking about how I coped with my crazy hands.  I’ll show you my tools and tricks, and I know I’ve already had some ladies from facebook say they’d blog too!  Let me get a few going, then I’ll turn it over to you!  Thank you for your input!  I know it’s going to help lots of folks!

- Lori (CavansMom, MomsWithRA.org)