Feeling OK about feeling bad – a great article from Harvard Medical

When you have a negative emotion, are you upset or disappointed in yourself? Do you feel “bad” or “guilty” about this emotion? If so, you may be at risk for poorer longer-term psychological...

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When a blanket fort is the answer to life!

It was a week of firsts for me – and none of them were good.  Combine with unplanned trip to Mayo, a lupus flare, unmanageable pain and the only solution that appealed to me was to spend the...

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STRESS and Rare Disease Part 3 – My Way

As promised, I would like to share some ways I have learned to deal with stress. Having had much experience over the years with stress, I’ve found some ways that seems to work pretty...

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STRESS and Rare Disease Part 2

I spend quite a bit of time working on reducing stress in my life.  Do you? I’ve compiled many articles on stress busting techniques.   The following are highlights from some of my favorites...

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I know the QUESTION, How do I get the ANSWER?

  I missed blogging last week because my right arm and hand are in a brace.  I know I’ve mentioned my chronic and moving tendonitis before.  I just never know when and where it’s...

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How a book author helped me with my collapsed lung!

Yesterday, I was rearranging some books. I came across one that had saved me in 2008 on a business trip.  This was a book written by a PI patient who is also a physician. Back in the old days we...

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Stress and rare disease – Part 1

  Is this you some days?  Most days? What are the reasons we get stressed? We know it’s not good for our long term health, our ability to heal. But those bills just keep piling up.  Can...

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I’m not telling you it’s going to be easy

I’ve been sad this week.  I lost a good friend.  I’ve been a patient advocate for 15 years.  I’ve met a lot of great people along the way.  In the first few months of advocacy, I...

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A Riff on the Mayo Medical Mystery tour

I was going to talk about SIBO today, but after spending 3 days at Mayo – I have quite a few thoughts swimming  in my head. I live about 120 miles from the Mayo in Minnesota.  I’m...

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Info about our Immune System

Hi, Some of this info is from LIVE SCIENCE in 2013.  I thought it interesting enough to share highlights with you.  Because – who knows – it just might help you. We already know that...

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Danger! Think this- not that.

Do you remember me telling you about the IDF CONFERENCE in June?  The story hasn’t ended. I had not flown for 2 years due to a serious autonomic event in Atlanta airport.  But I was so...

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Let’s Talk about CVID

Have you been diagnosed with CVID?  Did you know it’s the most frequest primary immunodeficiency in adults?  Approximately 1 in 25,000 people in the general population have CVID.  Thus...

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SUMMER, EXPECTATIONS & REALITY

Oh do we love summer. There is just so much to do- go bike riding, swimming, picnics, walks in the park, head to the zoo…. WAIT! I don’t feel well today. I have no energy to do this. The sun...

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THINK ZEBRA

Do you know why we refer to ourselves as ZEBRAS? Here is the explanation from The IDF.  ‘The primary immunodeficiency community often identifies with zebras. This is based on an old saying...

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THIS PATIENT BECAME AN INSTANT CAREGIVER – AGAIN!

Once again, my life was turned upside down. About 8 years ago, my husband had an ischemic stroke in the middle of the night. He had a long stay in the hospital after losing the function of his...

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