Coming soon: Mini-Series of what the heck just happened!

  SEPSIS. My story in multiple parts. The preview will include the signs I ignored. The MAIN EVENT will include how I ended up in St Mary’s at Mayo Clinic ER – signed a DNR, and how we...

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Start where you are. STEP BY STEP.

How many times can I say ‘I miss’? I miss how easily my body used to move- move through the day- move through exercise- move through life. I miss pizza ( gluten pizza). I really miss being able to...

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The Last Mango in Mound

Poison Ivy and Mangoes! They have the exact same oil- cause similar allergy. WHY DIDN’T I KNOW THAT? I started adding about 1 oz of mango in my morning smoothie. I peel it as I use it. For the...

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SUMMER- making the best of it!

All of us have a different approach to summer. What is it that you love about this season? To me –  Summer means lots of playing outside – which equals exercise. I like to hike with...

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Zebra weekly ‘DAY OF NO!’

Lets meet another really great Zebra.  I’ve had the pleasure of having coffee and a nice long chat with Stephanie Lewis- from Kimball, Tennessee. Yes- we talked PI – but we also talked...

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Hey, It’s OK!

How are all of us doing? We are coping. We are suffering. We are happy. We are sad. We are worried. But- we are moving on with our lives. I feel like this year has been an extra challenging year...

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Woah Nelly – Hold your Horses!

Please disregard my previous  post in which I claimed to be ready to get back to my life. I guess I posted it too soon. I’m temporarily on hold. Since I had melanoma, I visit my dermatologist...

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Resume Regular Programming

I’ve been my own hero for the last 2 weeks. I was at Mayo most of last week, and had to return on Monday for several days. I had labs, imaging, radioactive tests, girl tests, bone density, eye...

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1500 mile drive, Mayo, Empathy.

What do they have in common? They are all part of my past week. I left our winter hideout last Wednesday and started on the 1500 mile drive home. It took an extra day because of an eye condition...

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One Day at a Time is part of Kate’s PI story!

  I met Kate Hockin about 10 years ago at a local Minneapolis, IDF meeting. We’ve been friends since then – and I’m one of her life cheerleaders. After being sick for her first 2 years...

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Zebras have a story and this is a story about Jess!

This is a short story about Jessica Brunner, from New Milford, NJ. And my favorite part is the ending. So stay tuned. Jess has been sick with ear, sinus and bronchial infections, strep, cellulitis...

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Zebras have a story and this is Nicole’s!

Nicole Marie Sullivan is from Rockland, MA. She has been an official Zebra since September, 2017. However- it took her about 5 years to get her official PI diagnosis. Nicole misses the ability to...

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April is PI Awareness Month

April is Primary Immunodeficiency awareness month. What does that really mean for us Zebras? It means we can educate our family and friends about the reason we missed ( fill in the blank), or felt...

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MAYO: How the flu makes you so sick

  Why do we die from the flu?  Isn’t it just the flu? Dr. Pritish Tosh of Mayo Clinic: “People often forget that tens of thousands of Americans will die each year from influenza...

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The very bad, horrible, nasty flu season of 2017-18

  Yes- it’s true – this flu season was nasty and record breaking.  We didn’t imagine that. While it’s peaked – it’s still widespread. You’re not out of the woods yet. According to...

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Family, friends, guilt and rare disease

Sure most days I look like I’m OK – some days I even look better than that.  Some days I look like hell.  Rare disease is hiding in plain sight. How do you handle it when your friends...

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Musings

I know I promised CDC flu info this week – and it’s all next to me in a stack of papers. However- with so much chaos in the world and in my life – I thought I would share some...

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Widespread FLU activity- in all states!

It seems that nearly everyone is miserable.  We are suffering from classic flu symptoms of cough, fever, headache, stuffy nose and achy muscles.  The flu is widespread everywhere except for...

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TOP 5 FLU VACCINE MYTHS

  Direct from the Cleveland Clinic Separating fact from fiction during flu season   “Here are five common myths and truths about the flu vaccine: 1: A flu shot will give me the flu The...

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Flu statistics from the CDC

“Flu is the Rodney Dangerfield of diseases- People think of it as just the common cold- but it’s not.  It knocks you flat” says the former director of the CDC. Please give it the respect it...

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How long are you contagious with the flu?

Part 1 of flu series: There have been so many medical articles about the flu this year. As of right now – 30 kids have already died from this flu version. Less than 10% of flu is covered by...

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SELF CARE – from Harvard Health

I’m going to share a great article from Harvard Health on Self Care. It’s a topic I’m not ready to quit talking about. We ALL need some tips! 4 Ways to nourish body and soul by Monique Tello, MD...

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Self Care – YOUR WAY! YOUR WORDS! Part 2

I missed this follow-up during the holidays. It was a combination of a rare virus that hit me hard, and site maintenance.  This is the second blog that is ALL from you. YOU sent me your self-care...

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Happy Holidays – COUGH, COUGH, COUGH

Just when I thought I was feely lousy – I learned I could go much lower. After experiencing 6 week Epstein Barr flare – I added another one to the mix.   I did not have any idea why my...

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Self Care – YOUR WAY! YOUR WORDS! Part 1

On my last blog I asked for you to share your self care methods.  I heard from many of you.  Some of you said it was OK to use your words. That’s what I’m going to do here.  I was so impressed by...

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How do you define Self Care?

I’ve been giving quite a bit of thought about self care this month. I’ve been feeling really punk and it’s not something medicine can help. I have to learn how to deal with many health issues...

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Thanksgiving, Family, Friends and ACHOO

We have much to be thankful for this year – we made it through another year of living with rare disease.  Pat yourself on the back. It might not have been easy – but here we are!...

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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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