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. It made me extremely depressed. I realized, I needed to share the dark, as well as the hope.

Of all the things I’ve lost-my ability to walk more than several yards- possibly, 1/4 of a mile, without excruciating pain that often lasts for days – this is the one that is the VERY, VERY hardest for me. The night before Sepsis-was the very LAST time I was able to fully exercise- 6 miles after dinner. (Lack of blood flow- lead to 10 torn tendons in my legs and feet).

The ability to drive – I can’t concentrate well enough to merge- or sometimes, how to get home – not to mention the below mentioned dizziness.

2020 presented a whole new set of problems- bones breaking spontaneously. In addition- falls and dizziness. It seems that calcium likes to hang out in my blood and not in my bones.

Maybe the hardest is the emotional side- as in- I’ve lost the sense of a future and my self confidence. I was born with confidence- it’s hard to lose it.

I’ve spent at least 2 days every week since early May at Mayo going through testing and consultations. I have lots of answers- but plenty of questions left. I see my orthopedic Dr on Monday- and I’m prepared to BEG him for an operation that he claims is too risky for me. I’ve decided I’m willing to take the risk, because I want my life back. BUT……….

There’s more- but, I have to face the reality of this life.

Of course- all of this is happening to me personally, while people all over the world are dying, losing their jobs, and their own sense of life and a future. It’s hard to focus on me, when my heart is truly broken by our world and it’s circumstances. I mentioned in a previous blog- that I often bury my face in my hands and just cry. That hasn’t changed at all.

For the past 2 months, I’ve been really fortunate to have won a free package of health coaching sessions from my health club. They picked 5 people based on answers to a questionnaire and a short phone interview with the coach. The coaching sessions have been much more helpful and insightful than I ever hoped they could be. My coach studied at Duke Integrative Medicine, Mayo Center for Resilience and Wellbeing, and U of MN Center for Spirituality and Healing. She definitely has all of the bona-fides.

I had ‘homework’ after every session. I always looked forward to getting her questions answered. I learned quite a bit about myself that I previously took for granted- or didn’t really own up to. One of the big take-aways was that I don’t allow myself to feel the gift that being a patient advocate is. When someone thanks me for help- I seldom know how to take that as a compliment or as a GIFT. So, the next time, you thank me for help- please make sure that I realize the GIFT you just gave me. Coach helped me set some goals- the type I’ve not set for myself in the past. She also taught me some new breathing exercises (which I’ve always done). These are a bit more involved – and really help when I find myself agonizing over the state of the world. She reinforced something my Mayo Drs always tell me- I’m too hard on myself. Just BREATHE.

It’s been goal setting week in my head- I programmed a VERY SHORT physical therapy program to music (like when I used to teach- but with an iPod instead of a cassette tape). It only lasts for 7 minutes- my hope is to start small and work up to the same program several times/day. This ALL depends on my appointment with my orthopedist on Monday. But, I will do SOMETHING – even if it’s simply sitting and breathing.

Belly Breathing
Deep Breathing

So- I will continue to work on ACCEPTANCE and GRATITUDE.

In the words of Michael J. Fox- “Acceptance doesn’t mean resignation; it means understanding that something is what it is.- and that there’s got to be a way though it”

If Michael can do this- so can I.

Thanks for reading this- I needed to get it off my chest.

Hope to write again in 1 year.

Later

C

6 Comments

  • Anne Dalin Posted August 1, 2020 2:25 pm

    Thank you for sharing this and being totally honest. That’s never easy.

    • mm
      Carol Miletti Posted August 1, 2020 2:45 pm

      Thanks Anne. I appreciate your comment. Now, I’ve learned additional deep breathing techniques-in case Nancy ever needs my help again.

  • Debra E Posted August 1, 2020 3:06 pm

    October 13th, (a Friday in in 1917) will be my 3 year anniversary of sepsis invading my life. I totally lost my ability to speak, if I laid down, I stopped breathing. I could barely breathe upright. Pulse ox would drop into the 50’s. I still have trouble breathing, walking is a real trial with a great deal of pain. But losing yourself is the hardest part; I used to be busy, active and involved. I am not anymore, even after a long stint in Pt and therapy. Of course, a pandemic and ongoing health issues make it much harder. But I refuse to give up, I just have to go a little slower, choose more carefully what I can do with my life, and accept the downtimes. Carol, thank you for sharing, there is strength to be found in each other.

    • mm
      Carol Miletti Posted August 3, 2020 2:43 pm

      Debra,
      Anyone who has actual septic shock know exactly what we are referring to. I never tell the full truth-here, or to myself. It’s so hard to suddenly live a life that is a full 180 than it was the day before sepsis.
      Hugs, my friend

  • Anne Osterholm Posted October 27, 2020 9:22 am

    I don’t even have a diagnosis for my problem…just a guess. How and where can O go to learn what I have and find out if what you are talking about has any chance of working for me?

    • mm
      Carol Miletti Posted October 30, 2020 1:27 am

      Anne, I’m not sure what you are referring to. If you can clarify- I might be able to help.
      I can provide links and ideas.
      If you don’t want to share publicly- my email for Biotekrx is ckmiletti@icloud.com

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