As I finished vacuuming the upstairs and headed into the laundry room to fold clothes, my husband grabbed a basket of socks* and headed downstairs.  He grinned as he quipped, “Got any more naps planned for today?”

Funny man.

Make breakfast, take a nap.  Clean the kitchen, take a nap.  Vacuum and fold laundry.  Prepare the noon meal, and yes, take another nap.

It’s not that I planned it that way.  Some days, though, I’m just so exhausted that sitting down automatically means that I fall asleep.

Fatigue was probably one of my first autoimmune symptoms.  It went unrecognized, though.  I had four babies in five years, and a fifth a few years later.  I chased little kids all day.  Who wouldn’t be tired?  Somehow I had the idea that things would get better when the kids got older – when life got less labor-intensive during the daytime, and I’d be able to sleep all night.

I was wrong.  At some point, the fatigue wasn’t just a normal part of having a houseful of little kids.  Fatigue can indicate a problem.  I never talked to my doctor about fatigue, but once my RA was diagnosed and treated, I found that I had more energy than I’d had in years.

When everything is well controlled, I can go like the Energizer Bunny.  When things aren’t quite as well controlled, it’s more like my battery is about to die.

I’ve learned to pace myself.  A task that requires moving around can be followed by something that can be done sitting down.  Spacing the different types of jobs throughout the day, alternating periods of activity with periods of rest, allows me to get more done than if I push through all the demanding tasks and collapse before the end of the day.  When needed, I take a short nap.

Perhaps I should have been a cat.

*I don’t fold socks.  They all get tossed into a single basket after they’ve been laundered, and everyone is responsible for finding & folding their own socks.


Learning How To Be A Patient

(A Good One – Nobody Wants To Be The Patient Whose Name On The Schedule Causes The Doctor To Groan)

Being thrown into the role of patient is frustrating and scary.  I’ve learned a ton in the past three years.  Information abounds on medical websites and blogs, plus the traditional paper & ink books.  Sorting through everything to figure out what’s trustworthy and what’s snake oil can be a challenge.

Right about the time I was diagnosed, our local newspaper ran a story on how to find reliable medical information online.  That gave me a starting point.  Don’t google medical terms.  There will be an overwhelming number of hits and no way to verify the accuracy of the information.  Go to reliable medical websites.  Search places such as Family Doctor, sponsored by the American Academy of Family Physicians, or Up-to-Date For Patients (listed as a patient-education site by the American Academy of Family Physicians, the Society of General Internal Medicine, the Endocrine Society, the American College of Rheumatology, the American College of Obstetricians and Gynecologists, the American Thoracic Society, and the American Gastroenterological Association).  Other sites like MedicineNetJohns Hopkins, Mayo Clinic, and even WebMD are helpful and reliable.

Those sites, however, are for researching diseases or symptoms.  I wanted more.  In addition to disease-specific information, I wanted general “how to interact with and understand doctors” information.  There was no shortage of patients offering advice, but that didn’t seem like the best source for learning how best to communicate with doctors.  As if to emphasize that point, one person in particular was extremely vocal about how patients ought to behave, demanding this and insisting on that, but it didn’t take long to discover that the person had bounced around from one practice to the next; she’d been through five different rheumatologists in seven years, firing one doctor after the other when she didn’t get what she wanted.  I decided that I’d rather get my information from someone who knows what they’re talking about.  It seems as though doctors are in the best position to provide information on doctor-patient relationships.

A very helpful book I discovered was Dr. Jerome Groopman’s How Doctors Think.  If I could only recommend one book, I’d choose this one.  I bought it when it was only available in hardback, and it was worth every cent.  After reading it the first time, I went back through it again and took notes.  Then I loaned it to a friend who lost it, so bought another copy because I found that I often wanted to refer to it.  It’s that good.  Every time I read it, I discover something I hadn’t picked up on previously.  Your public library probably has it, or can access it through inter-library loan, but it’s in paperback now so reasonably priced.  Barnes & Noble has the intro available online, so you can get a preview before shelling out the money.

My next find was You: The Smart Patient.  I bought it.  There were tons of good tips in there that I found very helpful; things like compiling a medical history, asking questions, and a whole education on things one should know when taking medications.  There were also a few recommendations that aren’t necessarily the best information.  Consider the source.  Since The Joint Commission (formerly JCAHO) had a large hand in writing this book, take it with a grain of salt when they recommend checking Joint Commission’s website for a hospital’s quality ratings.  When they insist that the way to find the best doctor is to only see someone who’s a member of the American Medical Association, you gotta wonder why; a significant number of physicians don’t belong to the AMA, and they’re highly competent doctors.  You can probably find this book at your public library if you’re inclined to read it.

Next I discovered medblogs.  Some have been incredibly helpful, both in providing a peak into how doctors view their interactions with patients, and in giving general tips.  Dr. Rob’s Musings of A Distractible Mind was the first blog I found.  I spent all my free time (and a good chunk of time when I should have been doing other things) for a month reading through his archives.  If you’re not already reading Dr. Rob, follow the link and search on the categories Physical Exam and Patient Education.

From Dr. Rob’s blog roll I discovered other blogs, and those led to others, which led to others…  One that I especially liked recently went private, much to my disappointment, leaving my current favorites (in no particular order):

Even if you only lurk without commenting, you can learn quite a bit about doctors and how patients can get the best possible care by reading what these doctors have to say.

Books about the process of becoming a doctor have been educational, too.  On Call, What Patients Taught Me, Intern, and The Medical Interview are still in my bookcase, but many others are available at the public library.  Yet other books, less about the training and more about doctor’s observations, such as Bedside Manners, Every Patient Tells a Story, and Anatomy of Hope have also been telling.

One thing I gathered fairly quickly is that while some things are universal, others are a matter of personal preference.  Not every doctor does things the same way.  Some doctors use social media to make general patient recommendations, but while every one of those people might be a doctor, they’re not my doctor.  I put together a short list of tips that I’ve found on various blogs and took them to my doctor to see if those are recommendations with which he agrees.  It led to a very good discussion, and now I know what his recommendations are.

Make no assumptions.  Five online physicians might state a preference, but if they’re not your doctor, you still don’t know what your doctor would like you to do.  I’m so glad that I finally talked to my doctor and got his perspective.

What do you think?

The Prevention Protocol

I am utterly sick of the myth that living a “healthy lifestyle” will prevent illness.

  • Granted, eating a balanced diet of nutritious food is better than grazing on ice cream and bon-bons all day.
  • Getting regular exercise has distinct health benefits; moving as little as possible has a detrimental impact on people’s health.
  • Is there anyone who isn’t aware of the health ramifications of smoking?
  • Excessive alcohol consumption is another no-no.

The story goes that if you exercise, eat right, refrain from smoking, and drink moderately, you’ll be healthy.  That’s a lie.

Those claims need modifiers.  Living a healthy lifestyle can lessen one’s chances of developing heart disease, diabetes, hypertension, and some of the other chronic diseases, but there are no guarantees.

The prevention protocol only goes so far.  Ancestry is also a factor.  Luck plays a significant part, too.

Autoimmune diseases really don’t care how you’ve lived your life.  If you eat right, refrain from smoking/drinking, and exercise, you can still have crummy genes and lousy luck.

When I was a kid, my mom was careful about planning nutritious meals.  My dad worked too hard and grabbed fast-food for his meals, and his waistline showed it.  My mom was determined that her children not suffer the same fate.  She planned menus and we kids learned how to do it, too.  We learned how to cook so we’d always be able to eat healthily.  I still try to plan good meals.

Exercise?  I was an active kid.  Everyone ran around outside and played.  When I was old enough, I played softball and soccer in the youth leagues, and took swimming and gymnastics lessons.  This was back when schools still had recess and PE classes.  In junior high I continued to play soccer during the summer, then during the school year I played volleyball, basketball, and ran track.  And still we had PE classes.  Junior high PE was interesting; due to a scheduling mix-up, I and one other girl were assigned to the boy’s class.  While the rest of the girls were in the gym doing jumping-jacks, we were outside in the rain playing real sports.  After PE, when most people went to math or history, I got to change into dry workout clothes for my gymnastics class.  There was no question that I got plenty of exercise.  In high school, I had to drop volleyball since it was the same time as soccer, but that doesn’t mean I exercised less.  The basketball coach made a point of tracking me down and asking me to turn out for the team.  I continued to run track for the first two years of hs.  My junior year I started dating a body-builder, so we’d go to the local gym and I learned to work out with weights.  In college, I was glad for that time in the gym.  It gave me a chance to continue exercising even when my organized sports dropped to just summer adult-league soccer.  I started swimming more.

Once in the workforce, I wasn’t nearly as active, but managed to make it to the gym four or five times a week (and I was dirt-poor, so had to walk everywhere).  Exercising came to a grinding halt when I was put on bed-rest with my first pregnancy, and I never quite resumed the same intensity.  I maintain, however, that if gardening and other yard work can be considered exercise, then chasing toddlers definitely counts.

It drives me crazy when people act as if having a chronic disease is my fault.  I exercised.  I ate well.  I didn’t smoke.  Yet here I am.

Thank you for reading.
I’m expecting house guests, and will be off-line all weekend.