Understanding – NOT

Imagine getting sick, pampering yourself so your body can recover, but staying sick despite your best efforts.  Finally you go to the doctor.  Usually the doctor figures out what’s wrong and provides a treatment plan, so you figure that in a few weeks you’ll be back to your old self, healthy again.

Now imagine that you didn’t recover.  Instead of returning to health, you return to your doctor.  Your doctor tells you that you have an incurable disease.  Untreated, your illness can result in kidney damage, heart disease, lung disease, and deformity.  Having this disease means that your life-expectancy is ten years less than it otherwise would have been.  Within five years you’ll probably be unable to walk.

“Fortunately,” your doctor adds, “in the past ten years, some new drugs have been developed.  They will not cure you, but for many people, these medications will postpone the deformity and organ damage.  If you’re one of the lucky ones who are helped by these medications, you might not need a wheelchair for another fifteen or twenty years.”

Unfortunately, you can’t take the new wonder drugs.  They’re extremely expensive, and you have to try the less expensive medications (the ones that result in the aforementioned debilitation) before insurance will pay to try the medications that have been shown to help.

Stunned, you try to deal with this tragic news.

You’d like a listening ear and a shoulder to cry on.  As you come to grips with your new reality, friends call.  They ask if you’re feeling better, or inquire how it went at the doctor’s office.  You’d like some sympathy and understanding.  Instead, people respond with:

  • Just take some ibuprofen; you’ll be fine.
  • You should take glucosamine.
  • Oh, I have that in my neck.  You should see my chiropractor.
  • Oh, I have that in my little finger.  I take tylenol when it hurts too bad.
  • Oh, I have that in my left knee.  I just take motrin.
  • Oh, I have that in my shoulder.  It’s not that bad.

The average person has never heard of autoimmune diseases.  They don’t realize that an immune system gone postal is nothing like the wear-and-tear that some people experience.  Gazing in the mirror, you discover your feelings reflected back:

********

I wrote this post as a participant in IAAM’s 2nd Annual International Autoimmune Arthritis Awareness Scavenger Hunt, currently happening online at the IAAM Facebook page.  Several clues for the Scavenger Hunt will be posted around the web this weekend.  I am posting #5: Misunderstanding Autoimmune Arthritis.

As mentioned in the above post, those dealing with Autoimmune Arthritis often deal with a lack of understanding or sympathy about their disease.  This leads to your task for Scavenger Hunt Awareness Items for #5:  If you have Autoimmune Arthritis, what frustrates you most to hear?  A food or herb to try?  Home remedies? Or maybe it’s that “they have it too, in their knee”. 

To earn 5 Awareness points (that can be exchanged at the end of the online game for free Awareness merchandise), get or create a photo of this misunderstanding, then post it on IAAM’s Facebook page. You can post a picture of probiotics or be more creative and find a picture of someone pointing to their knee. You must post in the next 10 HOURS to earn your points.  Time’s ticking!

*IAAM stands for The International Autoimmune Arthritis Movement, which will soon become the 1st nonprofit in history exclusively benefitting Autoimmune Arthritis.

Conveniences



Having joints that don’t always work as designed can present challenges to daily living.  Fortunately, there are a few gadgets that can make life a little easier.  Here are some of my favorites.

Levers, not knobs – The doors in my house, with very few exceptions, open with levers.  The water faucets are the same way.  This is a great design.  Every time I see my rheumatologist, she asks if I have difficulty turning door knobs, and I always say, “I don’t have door knobs.”  If your home has the traditional knobs and they can’t be replaced with levers, Great Grips are good, too.

Garage door opener - There are days that my shoulders won’t tolerate reaching overhead.  That makes it extremely difficult to reach up to grab the rope which is used to pull the door closed.  Even when I can reach up, grasping the rope with stiff hands can be a challenge.  Pressing a button to let a machine take care of the door eliminates painful reaching and grasping.  My side of the garage has an automatic door opener; my husband’s side of the garage opens manually.  I have ample opportunity to reinforce how helpful it is to have this great tool!

Stand mixer - It’s really nice to put ingredients in a bowl and throw the switch, no holding, juggling, lifting, or reaching required.  I particularly like the dough hook because I never knew until RA how much wrist/elbow/shoulder action is needed to knead bread dough.  I can mix two loaves at a time with the dough hook, no hand-kneading required.  It’s great for mixing noodle dough, too.

Long-handled shoe horn - Since I put my shoes on as soon as I get out of bed every day, I’m at my stiffest when I need to bend over and shove feet into shoes.  The long handle is especially nice; this handy tool makes it much easier to get my shoes on in the mornings.

Pill sorter - It can be hard to get into the habit of taking medicine every day.  A pill box helps.  First, because I don’t have to get the lid off of all those medicine bottles.  Second, because it’s very easy to see whether or not I’ve remembered to take my dose.  For a while, I forgot to take my pills every Monday at noon.  The pill boxes made it easy to identify the pattern, and I realized I needed to figure out what was going on that day to screw up my routine – which helped me solve the problem.  Every couple months I bought an extra box, and now I have four.  When I get home from the pharmacy, I transfer my pills for the month into the little pill sorter boxes.  There’s no need to deal with the bottles again until my next trip to the pharmacy.

Dough thrower - Just for fun, because I like to bake bread (and my family likes to eat fresh-baked bread), but it’s become pretty hard to do sometimes, I thought I’d mention my dough thrower.  This is a large dough hook which attaches to a pail, and has a easy-grasp handle atop for turning the dough hook.  The pail is big enough to hold dough for four loaves of bread (or four dozen dinner rolls).  Some days I can’t manage the handle very long, but when there are enough people around that I need to bake four loaves, there are enough people around that I can recruit someone else to turn the handle.

Do you have special tools that make things easier for you?