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Archive for July, 2011

Find Support From Other Patients

(as published in the Syracuse Post StandardJuly 19, 2011)

When you must cope with a medical problem or manage a chronic illness, you’ll find you have a variety of challenges and questions.

For clinical, medical questions, your most trusted resource should be your doctor.

But when it comes to everyday management of your illness or condition, then you may be able to learn much more from other patients with your same diagnosis.

The answers and resources provided by other patients or their caregivers can be invaluable. Have they ever experienced similar side effects to drugs?  How do they cope with pain? Who is a good doctor for a second opinion?  Have they found any effective complementary or alternative therapies?  These aren’t medical questions – they are experience questions.

Where can you find patients with your same diagnosis?  Support groups.

There are support and affinity groups for every diagnosis or set of symptoms you can imagine.  From Alzheimer’s to hypertension, from Lyme Disease to depression – patients and caregivers are sharing information with other patients every day.

Some support groups are local. They may be sponsored by local hospitals, large physician practice groups or by associations that represent specific medical conditions or problems. Ask the nurse in your doctor’s office for information about these groups and find one that meets at a convenient time and place.

There are also thousands of Internet support groups. Many independent health and medical websites provide forums for individual diseases or conditions. Some of the same organizations that sponsor local support groups provide online versions, too. Link here to find listings and additional information about these groups.

If you decide to participate with an online support group, you’ll want to do so safely.  Remember, that even if they claim to be, other participants are probably not medical professionals. Be sure to verify with your doctor any medical information provided.

Conversely, don’t try to give medical advice to others.  You aren’t a medical professional either!

Finally, take steps to protect your privacy.  Stay as anonymous as possible. Don’t provide information that could identify you.  Use a first name only, and provide general geographical information if location is necessary at all.  Don’t use your personal email address publicly because you’ll open yourself up to spam.

You’ll be pleased at the many ways other patients and caregivers can help you, and you’ll feel empowered by sharing your own experiences, too.

………. ADDITIONAL RESOURCES ON THIS TOPIC ………………

Using Online Support Groups, Forums and Message Boards

Social Networking for Health Information

How to Verify Credible Health Information

Use Blogs and Wikis to Find Health Information

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Want More Patient Empowerment?
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About.com Patient Empowerment

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Tributes to the Bettys – Mom and Betty Ford

This is a bit of a diversion from my usual patient empowerment topics, but I hope you’ll find it of interest. Definitely seems worth sharing.

It’s an Ode to the Bettys – two women I have long admired.  They never met each other, but they shared a name, and yes – they are (kinda sorta) doppelgangers, too.

On the left is Betty Torrey – my mother – who was, of course, an inspiration throughout my life. I’ve shared Mom and her Alzheimer’s Disease with you before.  Mom never really understood my change in careers to supporting patients because by the time I made the change, her disease was too advanced for her to be able to understand.  But she would have loved it. And she would have been right there with us. I know she was supportive in spirit.

On the right, of course, is Betty Ford.  Betty Ford was an inspiration for her willingness to speak out, to talk about reality, to confront issues that had been, to that point, unspeakable.  She spoke about breast cancer when no one had dared use the word ‘breast’ before in the media.  When her family realized she had become addicted to pain killers, they intervened.  When she learned to control her addiction, she took an even bigger step and built a center to help others learn to control their addictions, too.

Betty Torrey was an inspiration to me and others around her.  Betty Ford was an inspiration to (perhaps) millions.

May both of them rest in peace knowing the positive impacts they had on their worlds.

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July – a Potentially Dangerous Time for Healthcare

(as published in the Syracuse Post Standard
July 5, 2011)

Seven years ago this week, I found a golf ball sized lump on my torso that changed the course of my life. After its removal, I was diagnosed with a rare, terminal form of lymphoma. Subsequently I determined I didn’t really have lymphoma.  That was eventually confirmed medically, and I have never had treatment.

The fact that my tumor appeared in the month of July played a prominent role in my misdiagnosis.

Why July?

When we need medical care, we need to receive the best care possible.  That best care requires a team of professionals playing different roles, depending on what ails us.  From doctors and surgeons, to nurses, lab specialists and others, the team must conduct itself in a highly coordinated and collaborative manner to be sure we get the right answers and care. They dance a well-coordinated healthcare tango because each knows the right steps.

But sometimes there’s someone new on the team who doesn’t know how to tango.  A new dancer can cause the entire team to stumble or fall. When that happens, we patients suffer.

July brings many new team members.

First, many of the “regular” professionals take vacations beginning with the July Fourth holiday, throughout the summer. That means new, sometimes temporary replacements must step in. They may only know how to waltz.

The second set of new members are recently graduated medical students. Having just completed their studies in May and June, they begin their residencies July 1. Not only don’t they know how to function within the team, but they have barely learned the two-step.  A study reported in 2010 showed that counties with academic medical hospitals showed a 10 percent increase in medical mistakes in in July.

So how can we patients protect ourselves?

If possible, avoid medical care in July.  In particular, any care that will require you to be hospitalized should be handled either before July 1, or postponed, if possible.

If you can’t avoid medical care in July, then be sure to verify every step with an advocate’s help.  This includes double checking any lab work that yields unusual results, which – yes – was the root of my misdiagnosis.

No doubt those professionals who care for us in July have the very best intentions.  But doing a tango with someone who only knows how to waltz results in toe-stepping and bad results.  If possible, it’s a dance we patients should just sit out.

………. ADDITIONAL RESOURCES ON THIS TOPIC ………………

 Your Annual July Warning – No Time to Seek Healthcare

How the Calendar and Time of Day Affect Your Hospital Care

and

What to Do If You Must be Admitted to the Hospital Anyway

……………………………………………………………………………………

Want More Patient Empowerment?
Find Hundreds of Articles at:

Every Patient’s Advocate

About.com Patient Empowerment

…and…
sign up for 2x per month newsletters of
Patient Empowerment Tips

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