A colleague of mine had a serious operation last month.  She has had rheumatoid arthritis (RA) for over 30 years, and lived through some severe flares that kept her bed-bound.

The result of some of these flares has been a crippling of her hands, and in particular her right hand. The deterioration -- that so many of you know so well -- has continued.  She has had more and more trouble using that hand to write, to drive, to open doors and jars, and to hold a cup of coffee.

For some time now she has been considering hand surgery to replace her knuckles.  This would unbend and unfreeze her hand, but the surgery is lengthy and potentially very painful.  The fear of the pain and being even more incapacitated kept stopping her.

Who wants to voluntarily sign up for pain, a hospital stay, and an uncertain outcome?  What if -- after all the trouble -- it didn't even make that much difference?  What if there were more pain?

She was full of doubt and indecision.  She talked about it for several years, and kept finding reasons to put it off.  The bottom line:  she was scared.

Last month, she did it.

The full results aren't clear yet, but the intermediate results are stunning.  She can move fingers that haven't been in motion in 20 years.  It makes her cry to experience the change and the possibilities that are now here for her.

It makes me cry, too, and it makes me wonder how it is that so often we don't make the moves that would change our lives because we're scared.

Courage.  The word comes from cour or heart.  Some of the work of living our lives in the biggest and strongest way we can means living from our hearts -- letting that energy move us forward.  Trusting our heart energy to carry us through those stuck places and those frightening valleys.

On a news show last week I saw another example.  A town in the Midwest had been the site of a deep mine.  It turns out the metal they were mining was toxic when large quantities of it were exposed to the air, and there were hills of sludge and waste piles all around the town.  It was declared a disaster area, and everyone was asked to move out of the town.  The government paid to relocate them, and slowly all of the businesses closed. The Post Office left.  There were no more grocery stores.  The schools and churches were empty.

The story focused on a woman who had lived in this town her entire life.  She was born there, married there, and had her children there.  She was being interviewed because she refused to leave.  She couldn't imagine living anywhere else.  She couldn't let go.

Wow.  The visual was her house -- surrounded by these mountains of toxic gravel -- and she was rocking on her front porch, staying put in a ghost town.

What a metaphor for the way we sometimes live.  We can't imagine the next place -- we are afraid of what it will take for us to get there.  So we stay put.  Talking about how hard it is.

If that feels like you today, go into your heart.  See where your courage is -- to take one step in the direction you need to go.

It may not be as dramatic as having your knuckles replaced, or moving to a new town.  It may be deciding that it is necessary for you to start some exercise, or take a class because you really are thinking about training for a different job.  It may be investigating some new treatments or starting your own blog.

Whatever it is, breathe into your heart and let your courage unfold.

Then set forth.

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Thanks for your responses to my last book review.  I am continuing the theme this week with another new book that came across my desk, The Empowered Patient by Dr. Julia A. Hallisy (Bold Spirit Press, 2009).

Dr. Hallisy had a very ill child.  Her daughter was diagnosed with bilateral retinoblastoma and she battled malignant tumors for over 10 years.  This heartbreaking history gave Hallisy and her husband an inside look at being a consumer in the American medical system.

It was not an encouraging picture.

As a result, Hallisy decided to write a book to share what she learned about the dangers of American medicine -- particularly inside hospitals -- and how consumers could become educated and take charge where it matters most.

Her message echoes what we teach (and preach!) on the CreakyJoints site -- that you have to be in charge of your healthcare.  But because of the errors and missteps that she observed, Hallisy takes our core message even further.

She has practical advice and has scouted out some of the places where medical errors can and do occur.  There is a chapter on infection -- of real importance to anyone with an autoimmune disease who has to be in the hospital.

Another chapter describes hospital protocol, including the designations of hospital personnel and what that title means.  Who knows the hierarchy of the hospital staff -- whether a surgical resident has more or less education and experience than a fellow or a third year resident?  She has a handy chart to help you navigate the "doctor chain of command."

She includes action steps to avoid medication errors, keep track of your own medical files and tests, and how to ask hard questions (and what those questions should be).

Two of her chapters deal with second opinions, and how to make a complaint and communicate about concerns.  Those are tricky issues, and there isn't a lot of how-to advice or encouragement to step into that sensitive terrain.

This author is candid, and she really delivers the "empowering" message of her title.

As we in the CreakyJoints community know, health care is a team sport.  (One of Seth's favorite sayings!)  It is the partner, friend or family member who helps to navigate these difficult places with the patient.

This book is written as much for those on your team as it is for the person with the illness. In fact, it seemed to me it was more important for the one who is not in the bed to read and absorb as much of this information as they can.  It may be too overwhelming to try to stand up for what you need from a horizontal position -- especially when you're in pain or recovering from anesthesia!

So get the book for the teammate, or better yet, read it together and make joint notes on what is most important for your situation.

I hope you never need this book -- but it is a great "just in case" resource.  And for those of us who are already dealing with a slew of medical concerns, Hallisy's advice may be just in time.

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The video on STILL'S Disease featured on the site this week raises a host of difficult questions and concerns.

This column is addressed to parents who are navigating the complicated terrain of caring for a sick child, although those of you who are caretakers may also find something that speaks to you.

Before Diagnosis

Persistence matters.  Follow up on tests, uncertainties and symptoms.  You are the best judge of what your child needs – seek advice and don't be afraid to keep asking questions.

Listen to your gut.  I have seen medical people (with all the best intentions) try to calm someone down, and miss what matters.  If you are concerned or worried, find someone who will listen.

Be informed – study, join discussion groups, read, read, read, and search for similar symptoms and situations.

Build Your Team

You are in charge.  I say this to adult patients, and it is just as true when you are advocating for your child.  You have to take responsibility for managing the medical care.

Talk to your doctor.  If s/he isn't responsive to you, move on.  You need a doc who is part of the team and who listens and works well with your family.  I know:  It's an overwhelming and scary time, which is why you need the doctor -- and the doctor's staff -- to be with you, NOT resisting you.

Nurses matter.  Your pharmacist is part of your team.  Your religious leader, and any other grownups who can help you sort through options, and make serious choices are part of your new tribe.

Keep track of records.  Don't expect the medical establishment to take care of this.  Keep copies of X-rays, test results, prescriptions for yourself.  Start a journal and take good dated notes.  Keep track of symptoms, and side effects.  Your record is part of the team.

This is a time to call in your markers.  Even if you're not a person who depends on others, get over it.  You need them.  You need friends who bring over meals, who run errands, do research, and who listen.  Your neighbors, your family, your dog.  They are all part of the great embracing team of support.  But you need to invite and allow them in.  Don't be a martyr.  There isn't time.

Communication

This can be hard, but your child needs the truth.  Not knowing is scarier than being trusted with the real story.  But you don't have to tell them everything.  Start small.  Let them know you are there for them.  Tell your child that lots of people are on their side and figuring out how to make them better.

Allow feelings.  Yours and theirs.  This may take practice.  Sometimes when someone we love is sick, it seems overwhelming to admit to fear, or sadness, or being so vulnerable.  But if we practice saying things out loud, that takes away some of the power.

I know a child who was so frightened by the grim faces, and the sound of her mother crying at night that she was sure she was dying.  It was a relief to be told that she had a disease, and that it could be treated and that her mother was sad because her daughter had to suffer.  The little girl could deal with that, and was able to say how she felt.  In the cleared air, there was a brightened mood.

You are the model.  If you shut down, no one will feel safe to express anger or worry or even joy.  If you have trouble doing this, find someone to talk to about it -- a therapist, a priest or rabbi, a wise friend.  Your habits and moods set the tone for the family.  Practice good ones.

Don't assume how everyone else is.  Ask.  Listen.  Receive.

Time Out

This is one of my constant themes:  When you are doing the hard work of caring for someone you love, you need a break.  You must take a break.

The airlines have it right when they tell us, "in the case of oxygen failure, when the little masks drop, put your own mask on before you try to help anyone else!"  You can't be on this mission unless you are taking care of your own physical, emotional and mental health.

Talk to your friends, read a novel, get a massage, take a walk, go out to eat with your partner ... You know what stokes you -- what music, beauty, food, dance, or play helps you remember to breathe.

Stay close to your spiritual center -- mediate, pray.  Avoid people who can't help themselves and bring up scenarios that worry you or make you feel like you're not doing enough.  You are.  You are enough.   You are doing enough.

Trust that your child is getting through this, with all your help and energy and love.

Breathe.

Now you have rekindled the stamina and the heart to do what you need to do.

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A client of mine isn't doing so well. I'm watching her cope with a new round of doctor visits, tests, questions ... and fears. She is on the merry-go-round of one visit leading to three new appointments with different physicians -- each one working to diagnose and treat her many symptoms.

There is something different in her approach though, and it is making me think.

She seems to be doing most of the work.

She is taking each opinion, each "recommendation," and she and her partner are sifting through the data, doing some research, and choosing what seems best to pursue as a healing option.

In the not-so-distant past, she -- and many of my other patients -- would have relied on a doctor to choose a path.

He (and The Doctor was almost always a He) made the decisions, and was The Omniscient Healer. We looked up to our doctors. We relied on their experience and wisdom -- and hopefully on their caring concern.

The landscape of medicine has changed with lightspeed ... and many of us are still catching up. We only have minutes with our physician. We are given options -- not decisions. And there is an often unspoken expectation that we are the ones in charge.

That's the good news -- and the difficult news, isn't it? We have to adjust to this new way of doing things at a time when we feel most in need of someone to lean on, someone who will take care of us and make it all better. But we also know that this is unrealistic -- a fairy tale that never quite fits the situation.

Our work is to help ourselves grow up a little into this responsibility and develop some ways to adjust and use our new power most effectively for our own healing.

I'm watching my clients and here is what I've learned:

The good news is, if we're in charge, we get to decide.

OK. The doc may recommend certain surgeries, or a certain course of medication. But once we do some research -- and ask around -- then we choose. You and your body are the best judge of what works for you. You're in charge -- and you know what works best for you.

• Speak up.
• Speak out.
• Tell the truth.
• And be The Boss.

It's empowering and it is what will make you feel better.

Get an advocate.

Don't try to keep track of everything or make decisions by yourself. Again, this is good news -- partners make us stronger. They help us feel better.

If it isn't a family member, take a friend. If you don't think you have a friend that close, then get to work to make sure there are some people in your life you can count on. This is a two-way street and it is part of healing.

Write everything down.

Get copies of tests, records, whatever. Doctors will make mistakes. You need your own written stuff.

Keep track.

Nobody else is. This means a written list of every medication and herbal thing you are doing. Make sure every doctor, every assistant, and every pharmacist sees it. Every time. Don't assume they "know" -- even if they have seen your list, they have often forgotten.

Have second opinions.  Use alternative modalities.  Use research.

The internet is wonderful ... and awful. Go to reputable sites, and double-check what you learn. Reach out to other patients, nurses, and support groups. Be informed. Then practice making decisions.

This is a new way of being for most of us. It steers us in the direction of responsibility -- instead of feeling passive or victimized.

Once you begin to practice this, it's heady, intoxicating, and, yes, sometimes a little scary. But being a grown-up is always more scary ... and more fun -- because you get to set the course. You get to decide how late to stay up, what to have in the fridge, and how to spend your money.

Should your health care be in any one else's control?

It's your body. Your side effects. Your pain. Your healing. Your life.

I'm rooting for you.

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