We are THANKFUL!
I would like to share my reasons to be thankful in spite of everything going on. I’m typically a very optimistic person – but, the story I’ve shared here has been of my ongoing...
Read moreFeeling very emotional-
I’ve spent the week drawing links between Primary Immunodeficiency, COVID-19, Autoimmunity and Sepsis. Except, that’s not what I choose to write about right now. I really want to share my...
Read moreMy 2 year Sepsis Anniversary- I hope to see you again in 1 year!
As I was thinking about what I wanted to share on my 2 year Sepsis Anniversary- I started having some very dark thoughts. I started listing everything I’ve lost since 2 years ago yesterday...
Read moreMeet Mandy, and Nugget- 2 Tough Cookies!
I first met Mandy several years ago at an IDF Conference. Of course, Mandy was in her LBD (Little Black Dress) for the evening events. I’ve always remembered her because she looked so...
Read moreMeet Judy K- PI patient- as we end PIDD Awareness month
“We must be willing to let go of the life we planned so as to have the life that is waiting for us” Joseph Campbell Judy is the lone family member with PI. While she was never ‘healthy’ she was...
Read moreMeet Joanna
A PIDD patient living in New York during the Pandemic Joanna has years of experience living with rare disease and the knowledge of how best to manage her life, protect herself from infection and...
Read moreWash your Hands!
I started writing this last week when I couldn’t stop crying. I was not crying for myself – but, for our country, the world, and all of my scared friends. I see the fear in my PIDD, Sepsis...
Read morePI + Flu patients tell their stories
After speaking with 4 PI patients – I learned how different their flu stories are. Sharing with you to compare to your own story – because, as EVERY Dr. likes to say “EVERY PATIENT IS...
Read moreMe and Santa
Why am I looking forward to Santa? It’s not for presents – it’s for spending time with family and being thankful for how far I’ve come since my bout with sepsis. Counting my blessings...
Read moreMy 1 year Sepsis Anniversary- today I’m celebrating ME!
So this is where and when it all started for me – exactly 1 year ago today. I was at Mayo Clinic for routine exams and follow-up appointments. Monday I felt really good and walked 12,000...
Read moreHow has summer been so far?
Did you go on vacation? Make the family picnic? Take the road trip? If you did – how did it go? Were you able to stay healthy? I know many patients who ended up in the hospital- sure hope...
Read moreRare Disease, Summer Fun and Expectations
Dear Rare Disease Patient, Whether it’s Primary Immunodeficiency, Myositis, Lupus, MS, RA or any of the delightful chronic disease we find ourselves dealing with – this is a note for all of...
Read moreWhere have I been lately?
I’ve been in hiding. I had 1 week at Mayo in May and I came home with HOPE. Even though I didn’t like any of the new diagnoses. The HOPE lasted about 4-5 days. My doctors advised me to push myself...
Read moreIDF National Conference 2019!
Feeling a bit nostalgic this evening as I watch my Zebra buds checking in to The IDF National Conference. I’ve been attending for at least 13 years. Sitting this one out – as I continue to...
Read moreSometimes, I don’t know
What I should be writing about. I don’t want to scare you into thinking that ALL the things that have happened to me -will also happen to you too. But they might. And that’s why I continue to tell...
Read moreTHE FLU – are we out of the woods yet?
Of course – the answer is NO – not by a long shot. Any chance you’ve had the flu twice this year? If so- you’re not alone. Most of the flu season gave us H1N1 flu strain – but...
Read moreIt’s time to Reboot!
Have I improved since my last post? I dunno. As the experts recommend – you should reboot IF: You can’t access memory- or you’re having memory leaks You’re performance is too slow You have...
Read moreToday is Rare Disease Day
Let’s celebrate YOU and me today. Remember how you were sick for so long and no one had any idea what was wrong? You finally got your rare disease diagnosis- did you feel Joy? Excitement? Relief?...
Read moreDear Me- I’m just not feeling it
Today I’m writing from a deep place- one that I’m seldom in. First of all – please don’t think I’m depressed- because I’m not ( I even had a very long discussion with my primary about this)...
Read moreFLU – It’s getting bad out there
Have you had your flu shot yet? If not – NOW is the time. What is flu? A CONTAGIOUS respiratory illness caused by various strains of the virus that infect your nose, throat and sometimes...
Read moreRecovery- A Glimmer of Hope
Sometime in the past 10 days- I began to see a glimmer of hope. Is this real- as in – am I finally improving? OR – is it my imagination? I don’t care which it is! I’m going to grab on...
Read moreMy word for the year is RECOVERY! What is your word?
A friend of mine posted a great article by Melinda Gates that really struck a chord with me. In ‘WORD OF THE YEAR’, Melinda states that instead of a New Year resolution-she finds it better to...
Read moreThis is what happened when I got SEPSIS!
The end of July- I was at Mayo for 2 days of routine check-ups. My Dr had increased my methotrexate dose to the highest level because I was having so much inflammation. We were checking to see if...
Read moreStress and rare disease
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 I go...
Read moreFLU – Start with the basics….
Have you had your flu shot yet? If not – NOW is the time. What is flu? A CONTAGIOUS respiratory illness caused by various strains of the virus that infect your nose, throat and sometimes...
Read moreThe first 90 days of ‘what the heck just happened’!
I’m aware I promised to write my next blog about exactly what happened in the hospital with SEPSIS. However – it hasn’t all come back to me. It’s getting revealed inch by inch and nightmare...
Read moreZebra Donna gets her Wings- RIP
Donna was a very good friend to many Zebras. She was a wife to Dave- a Mom to Jenna and Anthony. And her companion and buddy, Guido. Loved by family and friends. A warrior who was always there for...
Read morePrologue to ‘ What the heck just happened’
It’s been a month since I promised to tell you my story about sepsis. However, I got a secondary infection, and I have been laying low – so low that I’ve barely been out of bed. So I will...
Read moreComing 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...
Read moreStart 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...
Read moreThe 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...
Read moreSUMMER- 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...
Read moreZebra 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...
Read moreHey, 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...
Read moreWoah 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...
Read moreResume 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...
Read more1500 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...
Read moreOne 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...
Read moreZebras 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...
Read moreZebras 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...
Read moreApril 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...
Read moreMAYO: 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...
Read moreThe 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...
Read moreFamily, 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...
Read moreWidespread 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...
Read moreTOP 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...
Read moreFlu 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...
Read moreHow 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...
Read moreSELF 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...
Read more