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 quickly.  However – they don’t ALWAYS get the job done. But I’ve learned how much stress can harm my body and cause further issues.  Seems like if I worry – I feel worse.  I’ve developed a laissez-faire attitude about the health challenges.  Let me give you a few examples.

First of all- before I was diagnosed- I was a VP of sales and had up to 160 people reporting to me.  I THRIVED on stress back then.  Not so much now.

About 16 years ago, I had a year long infection of Valley Fever.  I lost 30 lbs, some hair and was very sick with lung infection. During that time, I had a suspicious breast lump.  While waiting for the biopsy results- I taught myself how to cope – and I’ve never lost sight of that great lesson.   I realized the diagnosis was out of my hands.  My Mom used to sing a song to me a very long time ago – ‘ What will be, will be’. And as I was waiting for biopsy results- I realized I had to always have a PLAN A, PLAN B – and maybe a PLAN C- so I would be prepared to react accordingly. Because I really had no control of the situation- I had to learn how to control my response to it.

I’ve had many challenges since then – in fact, dealing with one or more right now.

The #1 thing I’ve learned is the importance of deep breathing.  It will slow your heart rate down.  REALLY DEEP.  As in fill your tummy with air and make it is big as you can. Let your breathe out very slowly – repeat, repeat- repeat as necessary.

Another trick is to find your happy place.  Somewhere you’ve been that was your very favorite- most relaxing place in your life.  Then, teach yourself how to get there as fast as you can- on demand relaxation.  Go there.  Stay as long as you can.  I use this technique for MRI’s and PET scans.  I’ve learned to go so deeply that I can see the words on the book I was reading at the time -while sitting on a beach watching the sunset. One of my favorite memories.

Get yourself out in nature – whether to walk, ride or sit.  Find peace in the quiet.  Take deep breathes and close your eyes and smell.  Learn to use all of your senses. What you’re aiming for is to take yourself OUT of your head.

I’ve done yoga since college – and I still use it to work my body through deep pain ( I can’t take meds).  It works for me 90% of the time.  I also find the deep sleep helps a great deal.  If my body is in lots of pain, that means a heated throw.  This relaxes me and helps with the pain.

A few years ago, one of my great docs at The Mayo sent me to a course in stress- free living.  It helps me with heart rate, stress, depression and what ifs.  My teacher has written a few books.  I’m going to add the picture of them here.  If you have any questions – PLEASE, let me help.

If you have suggestions- please share with all of us.

Later – it’s time for some downward facing dog




  • Carol Marzano Posted September 14, 2017 8:46 pm

    Carol Miletti your story is the same as so many of us PIDD patients. Thank you for letting people know what works. I would say that the most important point of your story and advice is the fact that we have to accept that the disease itself is out of our control. What I mean by that is we have it there is at this point no cure, but its how we deal with our daily lives that counts. You can only change the things that are changeable so the PIDD we both share and at this point cannot change, but like you I found that I enjoy exercise and crafts and writing. Like you I had a rather big job in Pharmaceuticals working all the time loving everyday until I became sick, but had I not become sick I would have lost out on the good parts of my life that I have found after becoming ill. Always remember, ” When you get lemons, make lemonade !”

    • mm
      Carol Miletti Posted September 18, 2017 7:15 pm

      Thanks Carol. I sometimes feel that I did not find out who I really was until I had to learn to manage life with chronic disease. Or – when you get lemons – make lemincello

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