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….


I don’t feel well today. I have no energy to do this. The sun and heat make me feel so crummy.

How can I let ( fill in the blank) down?

They are EXPECTING me to do this.

I am EXPECTING me to do this too.

How do we manage the overwhelmingly strong desire to do what we love with the diminished ability to follow-through?
This has been one of the hardest ‘lessons’ for me to learn.

You too???

I was always a very high energy person- an overachiever! How did I ever manage 160 sales people and fly all over every single week? When I look ( wistfully) back at those days- I wonder too. I had not been diagnosed yet. I was not really sick yet. I had some odd illnesses when I was younger – but in 2000, I was diagnosed with Valley Fever ( coccidioidomycosis). I lost 30 lbs, had fungal pneumonia for over a year and felt like I was at death’s door. When I was not recovering like I should – I was sent to the Mayo for further evaluation. That is what lead to a diagnosis of Primary Immunodeficiency. Which was actually only the beginning of my troubles. I won’t try to list all of them – but it seems like about every 18 months I am diagnosed with yet another autoimmune disease. And just for fun- let’s throw in melanoma and actively replicating Epstein Barr for almost 2 years and counting.

How do you deal with this you ask?


Just like the old fashioned advice.

How many days do I cancel my plans?
More than I care to admit.

How often do I exercise?
Not as much as I want.

How much do I sleep? ( see above)

I read a great deal. And write. They both calm me. I avoid stress when I can. But it doesn’t always work.

Does my family understand? Darn – not like I wish they would.. Do I feel left out? Often. Usually. Mostly. How many times do you get to say NO until they stop asking?

And what about you? How do you cope if you have young kids?

How do you work and stay well?
How do your PIDD KIDS cope?

I will admit – energy, or lack of, is what bothers me the most.


Later – I need a nap



  • Randi Rodman Posted July 19, 2017 2:01 am

    So nice to read your blog Carol. At an appropriate time,too, as I am readying for company. Just food shopping this morning took effort. I pace things out now,…make plans on the day of;…and, when I have a good day I try to do as much as I can. Day three post larger sc infusions are my window of energy sapping opportunity. So, I live with it, work around it, and sometimes just surrender to it.Thanks for your writings!

    • mm
      Carol Miletti Posted July 20, 2017 12:52 am

      It seems like everything takes so much effort Randi. Sometimes I chalk it up to getting older – but with so much going on inside my 5′ body – it seems like there’s always a fight inside me.

  • Leslie B Mink Posted July 19, 2017 8:36 pm

    So right! I never knew fatique could get this bad. It’s not just the PIDD, add in fibromyalgia, lupus. Osteoarthritis, uveitis and any other “itis” I might have, and a night’s sleep isn’t enough!

    • mm
      Carol Miletti Posted July 20, 2017 12:55 am

      Leslie, I’m with you. I’ve added lupus and autoimmune retinopathy since we last talked. Too much for one body – and yet, we keep putting one foot in front of the other. And we’re still here. Just too pooped to pop . My best to you

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