Picking Up The Pieces

Near the Puget Sound, where I live, snow seldom falls.  On those rare occasions that cold, white precipitation makes an appearance, accumulation is generally less than two inches.  A few weeks ago, however, things changed.  It snowed, and snowed, and snowed some more.  We had a record-breaking TEN inches overnight, and the snow continued to fall.  It was beautiful!

The interesting thing about living where there is very little snow is that very few cities or counties own snowplows because it’s difficult to justify the expense. On those rare occasions that snow falls, everything comes to a grinding halt. My schedule instantly emptied. Swimming lessons were cancelled. Violin lessons were cancelled. Piano lessons were cancelled. Drum lessons were cancelled. The dishwasher installer phoned to say he couldn’t make it. The streets were impassable, and we enjoyed a peaceful week at home without having to drive anywhere. I loved it.

    

Not everything was perfect, though.  There’s a huge maple tree in my yard:

A few days after the snowstorm, we got hit with an ice storm.  Freezing rain coated everything.

I’d never seen anything like it.  Never heard anything like it, either.  It was too much for the trees.  All around, it sounded like gunshots as limbs succumbed to the cold and ice, snapping and plummeting to the ground.

The ground shook as our beloved maple lost its battle with the ice.

As we’ve been cleaning up the debris, I’ve been thinking that this storm was a little like receiving an RA diagnosis.  Storms can’t be prevented, and neither can RA.  Suddenly your entire world has changed, and there isn’t a thing you can do about it.  We just deal with the storms in our lives, and pick up the pieces so we can move on.

My poor maple tree.  On hot summer days, I’ll miss the shade.  My kids will miss their tire swing.  There’s no point in mourning forever, though.  We could pile everything in a heap and have a big bonfire, but then all we’d have left is a pile of ashes.  What a waste.  Instead, the smaller branches have all been carefully stacked; we’ll use them to heat the pool this summer.  My daughter will turn some of the wood on our lathe, and make beautiful pens – which she hopes to sell to fund a missions trip she wants to take this summer.  The larger limbs have been set aside to season, and will become beautiful salad bowls.  We’ll try to take a disaster and make something beautiful out of it.

I want that in my life, too.  A chronic diagnosis can seem like a disaster.  Maybe there’s a way, though, to pick up the pieces and turn them into something good.

It’s Not A Contest

One of the hardest things to deal with, after leaving a rheumatologist’s office with a new diagnosis, is the ignorant comments from friends.  Our society lives with the delusion that given any aches and pains, a trip to the doctor will result in a diagnosis and a prescription to make everything right again.  Wouldn’t it be nice if that were how life really worked?

With a new diagnosis, wanting a listening ear and a little sympathy while we try to get our bearings and figure out what happened to our life, it’s distressing to be dismissed with a shrug and insensitivity:

  • Oh, I have that, too, in my little finger
  • Aren’t you too young for that?
  • Just take a Motrin

Recalling those days, I try to be supportive when I meet others facing similar challenges.  I was surprised then, a few weeks ago, by one man’s response.

After shaking hands, I thanked him for not squeezing too hard.  His wife (standing beside him) said, “Well, he has arthritis.”  Guessing that he’s about my age – maybe a bit younger – I asked, “Oh?  What kind?” and was informed that he has polyarticular arthritis.  Thinking to lend a little support, I mentioned that I understand, since I have RA.  He snapped, “Well, mine’s worse!  It’s in every joint.”

I was taken aback.  The online community is extremely supportive of one another, so it was shocking to think I was offering understanding/commiseration and have it thrown back in my face, and also have my circumstances belittled.

Inside I was seething.  How dare he!  What kind of idiot automatically assumes his condition is worse than someone else’s?  How could he remember a long word like “polyarticular” yet not know enough about it to realize what a jerk he was being?  If I were ten years old again, I’d have shouted back at him, “Oh, yeah?  Well that’s not even a real diagnosis!  What ICD-9 code is your rheumatologist using?”  Fortunately, I’m only ten in my head, so I kept my mouth closed and walked away.

Later I started second-guessing myself.  Maybe I’d forgotten what polyarticular arthritis is; maybe I was confusing it with something else.  I looked it up.  Polyarticular arthritis means inflammation of more than four joints.  It’s a symptom, like “sore throat” or “abdominal pain.”  The trick is to figure out the cause, and the differential diagnosis for “inflammation of more than four joints” is a long list of possibilities.  It includes things like parvovirus, Epstein-Barr virus, hepatitis B, HIV, gonorrhea, chlamydia, salmonella, lyme disease, multiple myeloma, plus a host of autoimmune diseases such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, scleroderma, Sjogren’s syndrome, and lupus.  It was just what I remembered:  the symptom is inflammation in many joints; the diagnosis says which disease is responsible.*  Obviously, treatment will vary depending on which disease is causing the inflammation.

I feel sorry for the man.  Imagine going through life competing to have the worst disease.  I didn’t know it was a contest.

If it were a contest, it’s one I’d be happy to lose.

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*If the doctor can’t figure out which disease is causing the symptoms, unspecified polyarthropathy or polyarthritis is a possible diagnosis (ICD9 code 716.5 ).

Getting Along

Raising children, teaching them how to get along with others, provides an interesting perspective.  One of my kids in particular gets focused on demanding his rights.  I have the right…  (Yep.  You do.  How’s that working out for you?)   That child is slowly learning (with lots of teaching and lots of practice) that life is a lot more pleasant if he sometimes gives up his rights and works amicably with others.  The more he does it, he’s discovering that when he doesn’t insist on always getting what he has the right to have, that others are sometimes willing to give up their rights to help him out, too.

From what I’ve read in a comment thread recently, that’s a lesson that will stand him in good stead his whole life long, and one that too many people still need to learn.

As a person who’s been unwillingly thrust into a role I never signed on for, I’ve learned a ton about our healthcare system that I never dreamed of a few short years ago.  I know that the things I’ve learned are just the tip of the iceberg, so when a doctor is willing to give tips to patients on how to make the most of medical encounters, I’m all ears.  Recently, in A Letter to Patients With Chronic Disease, Dr. Rob said,

There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.

Excellent!  This sounds like tips worth reading.  A quick summary (since I’m guessing my readers also read the linked blog):

  1. Don’t come on too strong
  2. Show respect
  3. Keep your eggs in only a few baskets
  4. Use the ER only when absolutely needed
  5. Don’t avoid doctors
  6. Don’t put up with the jerks
  7. Forgive us

Pretty basic, really, but fleshed out to be a powerful post.  When I first read it there were no comments.  I wanted to think about my response, so left the blog open in my browser to return to later. 

Life happens (quite a bit recently), and when I finally got back to it there were tons of responses.  And I was shocked.  Not that there were comments, but that so many people were upset about the post.  Because, you see, I don’t think this gives different criteria for people with chronic diseases than for healthy  people.  I thought this sounded like a pretty basic reminder for everyone.

  1. Don’t come on too strong because you only get one chance to make a first impression.
    So… pick what you want that impression to be.  Be aware of how specific behaviors are likely to be interpreted and decide if that’s how you want to present yourself.
  2. Respect – Ever read the book All I Really Need to Know I Learned in Kindergarten?
  3. Don’t doctor-hop
  4. The EMERGENCY room is for EMERGENCIES

And so on.  This is basic stuff, and some people were offended.  If that’s how very many people with chronic illnesses are, it’s no wonder that there are doctors who would rather not deal with us.  Nobody enjoys being around people who walk around with a chip on their shoulder.

I hope I’m not like that — and that I never get that way.  I realize that I’ve been really lucky to get terrific doctors, and sometimes wonder if I’d feel differently if I’d had numerous bad experiences seeking medical care.  Maybe.  But part of me wonders if sometimes people don’t create their own bad luck.  I don’t really know, but if I’d had more than a handful of bad experiences, I’d start to think maybe the problem wasn’t all those bad doctors after all, but was perhaps staring back at me from my mirror every morning.

But I don’t know, because I’ve been blessed with terrific doctors.  My rheumy writes a report to my PCP every time she sees me so both doctors know what the plan is.  If I need to call either doctors’ office, the nurse calls me back (usually the same day).  If someone in my family is sick and needs to be seen, they work us in — my PCP holds spaces in his schedule for same-day issues so that he can work people in.  My family physician has gone above and beyond the call of duty in providing exemplary medical care for me and my family.

So I, for one, am very happy to read Dr. Rob’s tips.  I’d do anything I could to make things easier on my doctor.  If it gets me help more easily than I’ve gotten it in the past… well, I honestly don’t see how that would be possible, but I’ll file this post away for the sad day that my doctor retires and I’m stuck searching for a new one.