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.
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)