Dear 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) I’m just dealing in reality.

As many of you know- I’ve been recovering from Sepsis for almost 6 months now. I was really starting to improve- going to PT, exercising ( a little), and outlook was looking UP.

However- I started having intense pain in my right leg- as well as several other peripheral issues. Just to remind you that when your blood pressure drops so low (70/35) for so long (60 hrs) blood flow to other vital organs slows down and it takes a very long time for them to recover. My head (think brain), peripheral system ( think muscles, nerves, tendons, ligaments and other soft tissue) and auditory system was negatively impacted.

I’m not going to talk about anything except for the recent tests I had – not the upcoming ones.

Thursday I had 2 MRI’s and 2 Xrays that covered my spine, pelvis and knees. ( I cried and cried and the nurse held me). The results shocked me. I was not at all prepared for what was in them. I expected them to say I had bursitis on both hips- I expected them to say I had synovitis in both knees. YES – they said that for sure. That and a whole lot more. What I did NOT expect was torn tendons in multiple areas- and the one that SHOCKED me was that the tendon at the bottom of esophagus that attaches to your stomach was TORN. And that the tendon over my hip was torn too. Or that I have multiple tumors on my spine and hip (disclaimer from Mayo – most likely benign). There was much more in those reports – I’m not going to get down in the dirt on this.

Because I want to talk about how this makes me feel.

First of all – I’ve been in intense pain for so long I can’t remember what it feels like to be normal anymore.

I’ve put so much into my recovery- inch by inch- but it was forward momentum. And now all of this will be backward movement. I’m running out of time, energy and health.

The combo of PI, Post Sepsis and age does not make me a good candidate for multiple surgeries – and I’m not sure how much I’m willing to put my body and my family through. I’m talking real right now – no stars in my eyes.

Living with rare disease is always so complicated- we have to find the best way to navigate. I thought I had found my way – but, now I’m lost. I’ve holed up this week-end – deep thoughts, prayers, trying to find my way to what will be my new reality. I still haven’t found the path.

I return to Dr. tomorrow to formulate a plan – which will include more tests, more visits, more and more and more.

I’m just not sure………

I think I need a hug – or maybe lotsa hugs




  • Sue Posted February 24, 2019 10:47 pm

    Sending hugs and so much positive energy to you, Carol.

  • Theresa Bailey Posted February 25, 2019 12:28 am

    Carol is one of my Best friends! I have been trying to reach out to her . No one in your organization will help me. I want to connect with her and comfort her during this time. The phone numbers I have do not work. I moved to CA and we lost touch. Please let her know I have been trying to contact her for almost a year! I found this blog and have followed her journey. Need to talk to her! Please HELP! 612-839-3385

    • Martha Posted February 25, 2019 2:53 am

      I’ll give Carol your info

    • mm
      Carol Miletti Posted March 9, 2019 3:16 am

      Theresa- can I reach you at this email addy? If so- I’ll write

  • Laurie Posted February 25, 2019 3:12 am

    My gosh little buddy!!! I am in tears for you. You are my strength. I love you so much. I am very greatful for our meeting and our day in San Francisco. Carol, prayers, love and Snoopy hugs always.❤❤❤

  • Karen Dawn Wheat Posted February 25, 2019 9:24 pm

    Since I have no words, I’ll simply say that I believe in you, I love you and you are in my prayers, dearest Carol. I’m always in your corner ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

  • Marla Minowitz Posted March 3, 2019 8:35 pm

    Carol, Altough I only know you a year through the friend of a friend on Facebook, I have cherished our comminication and I have been honored to be able to read your poignant and direct postings about your experience. You are one of our better angels. God Bless.

    • mm
      Carol Miletti Posted March 5, 2019 12:09 am

      Thank you Marla – this is so sweet.

  • Debra Foxworth Griffin Posted March 5, 2019 7:14 am

    Carol you have gotten me through the beginning of my diagnosis with CVID, you helped me understand that it was okay to go through Immunologist to find the right one. To try as many IG products as I needed to find the right one for me. I have watched you struggle over the last almost 9 years from different health issues and I have been encouraged to see you fight. This breaks my heart and my heart and thoughts are with you. My understanding of just having diagnosis after diagnosis specialist after specialist come at you. But you have gone through so much more for so much longer. My prayers are with you and I support what you choose is best for you. Those tears are there to help you emotionally heal. Sometimes a few other times many tears. You are a sweet Zeep and I have grown to have a Zebra love for you that a healthy person can’t understand.
    Love, Hugs & Prayers Always

    • mm
      Carol Miletti Posted March 9, 2019 3:15 am

      Thank you Debra. While my pain and problems persist- my attitude is on the upswing. I appreciate your thoughts and caring. Back at ya, Carol

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