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.

Defense Mechanisms

Over at Dr. French Fry’s blog, I read this:

In psychiatry there is something known as a defense mechanism.  Defense mechanisms can be mature, neurotic, or immature, they are ways that people deal with feelings of anxiety, pain, and internal conflict.  One of my personal favorites is suppression.  It’s classified as a mature defense mechanism, and is defined as conscious burrying of troubling thoughts so that you can continue to function.  Just push it out of your head an keep on truckin’. Acting out is an immature defense mechanism. Projection is transference of anger to a more acceptable recipient.  Intellectualization is when one can’t wrap his head around a painful thought or uncomfortable experience so he finds a rational way to process the info.  A classic example always given the text books is that of a man who finds out he has cancer.  This causes him to learn everything he can about the pathophysiology of the disease and instead of telling his son he has cancer he teaches his son about the aberrant cell cycle, P53, and the Rb gene.

My kids are getting used to hearing me burst into laughter about something I read on various blogs.  If I keep laughing, they’ll usually peer over my shoulder to share the moment.  Nobody understood why I thought the quoted passage was funny!

It explains so much.

Life is Good

First, thank you so much for the kind words and support.  It really helps.

***

Last weekend my brother came to visit and I showed him my notebook and database.  He thinks I keep better records than the doctor!  Of course that’s not really true (I’ve seen my doctor’s chart).  As I’ve been plugging my notes from past appointments into my database (testing to see which parts need tweaking yet), reading old symptoms reminded me of how truly awful I felt for the first couple years.

There’s nothing like a quick review of the past to highlight how incredibly well Enbrel is working for me.  Getting all the sugar out of my system helps, too.

I spent years planning my errands so that there wouldn’t be too many at a time.  “Pace yourself” is a lesson learned early on (even before an RA diagnosis).  Three stops was my max, then it was time to head home and take a nap.  Going out to dinner was never an option; lunch maybe, but never dinner.  I tried not to make many commitments, because I couldn’t count on having the energy to follow through, but wouldn’t let people down if I’d given my word. 

Things did improve after being diagnosed.  Every new DMARD helped my joints be a little less sore, and I wasn’t quite so exhausted, but I was still tired all the time.  Since the addition of Enbrel, I’m down to only one joint that really bothers me (yes, my rheumy finds that others are tender, but nothing like before).  ONE!  The thing I love though, is having energy again.

Energy!  Yes!  I’ve been able to take my kids places and do things with them.  I committed to teaching Sunday school, because I know that I’ll feel well enough to do the prep and still show up to teach.  We recently went to a wildlife park and spent four hours walking around.  I felt such a sense of victory!

This morning I took my kids ice skating.  Truth be told, I was a bit hesitant about this one.  Given the course of this disease, though, I figure I better do all the living I can while I have the chance.  I had fun, and the kids were delighted that I skated, too.

My orthotics fit inside the ice skates and worked perfectly.  I couldn’t lace my skates up tight enough, but after all those years of tying kids’ shoes for them, they were happy to return the favor.

As I sit here, in addition to the shoulder issues, my hip is sore and my knees are bruised.  Yes, I fell.  Twice.  And do you know, I love knowing that these joints are sore because I was out there living instead of sitting on a bench watching everyone else.

Visiting with the staff as we were leaving, I commented that it’s years since I’ve skated.  It’s always been so much fun.  The staff said, “It’s never too late.” 

They’re wrong.

We never know what life is going to throw at us.  Someday it might be too late.

I want to do the things I can while it’s still a possibility.