When you have a cold, I want you to know why I’m not giving you an antibiotic

This is from a family physician.  Trying to prevent antibiotic resistance.  We need to be especially careful about this. Please don’t always ask for an antibiotic,   I want you to know about...

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When Sunny gets Blue!

  Most people who know me think I’m always full of energy and have a sunny disposition.  Those people don’t see me when I’m NOT that person. That’s when I go into hiding. Following a...

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The Smoky Mountains and living with rare disease

As I was driving on a 1500 mile trip last week, I was thinking about how much my last few months ( or years) have been like going through the Great Smoky Mountains. Much like life itself –...

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What to do for a miserable cold?

No doubt colds are miserable.  We can’t take a magic pill and make it go away.  I think I’ve found a magical ‘ Ward off the evil spirits’ soup that I make when I have a cold.  It’s loaded with...

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OH NO- I think it’s the flu-ACHOO

Important info from the CDC on flu What is Influenza (also called Flu)? The flu is a contagious respiratory illness caused by influenza viruses that infect the nose, throat, and sometimes the...

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It’s TIME for your FLU SHOT!

  It’s that wonderful time of the year.  When everything turns magically orange and gold. When drinks all become pumpkin this and pumpkin spice that.  And it’s also time for your FLU SHOT! We...

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Sometimes I come across an article that hits home so perfectly I feel the need to share the exact words.  This is from Harvard Medical School and addresses the upside of stress! I bet you thought...

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Save the date for IDF Retreats

If you have the chance to attend one of these-you will love the smaller venue.  I love the retreats! Cozy, friendly and more intimate than the National Conference. If I find enough of my Zebra...

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“I find this disease so isolating”

“I find this disease so isolating! Friends don’t understand, co-workers really don’t understand. I have no energy to do anything other than work and sleep so I have very little to talk about with...

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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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Summary of my thoughts on IDF CONFERENCE 2017

Hey- it’s the middle of a long 4th of July week-end! Hope everyone feels well enough to enjoy at least some of it.   I wanted to follow-up with the summary of the IDF Conference.  It took me...

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What I did at the IDF Conference

Hi, Carol again.   It’s taken me a few days to recover from the long flight and the IDF Conference.  Sleep, rest, trips to physical therapy.   It’s always a balance between what you want to do and...

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Let’s talk about the IDF National Conference!

Hi, I’m at the Immune Deficiency Foundation National Conference.  I’m learning much about our disease.  Also meeting vendors who make our beloved IgG treatments. Have any of you...

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What should you expect to find hidden in my blog?

1) It can be interactive. You can ask questions – get answers, ideas or suggestions. It will be like Facebook for a chronic disease patient! Except smaller and more intimate. 2) Invite your family...

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Hi from Carol’s Corner

Many of you may already know me as a member of the PIDD, Autoimmune or Neuropathy communities.  Some of you may know me as a melanoma survivor.  Others as a stroke caregiver.  I know my way around...

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