Feeling 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 feelings.

This Pandemic has been hard on all of us- no matter what situation we’re in. Add to that the stress of having rare disease- it’s not easy.

( and to anyone who has lost a loved one- I’m deeply sorry).

The best thing we, as patients, have going for us right now – we have learned over the years how to isolate, stay away from sick people, miss out on family gatherings, amuse ourselves and we’re still standing.

I was able to see my sons and granddaughters for about 2 hours over the summer. Somehow- it was not enough. I’m so incredibly lonesome for them.
And we know it’s not going to end soon. I just want their hugs.

I missed my September birthday because I got a really strange virus. It lasted 6 weeks. Fever the entire time. Dr had me get 2 different COVID tests. I even had COVID toes.

But, I did NOT have it.

I never did learn what I had – because it’s next to impossible to see my primary.

Unfortunately, my 97 yr old Mom, in a dementia home, has COVID.

So far, Mom’s symptoms seem to be loss of smell and taste- as well as diminished oxygen levels. She’s been on oxygen for about 10 days. She’s eating cookies😘🍪

And now, more about my current health status following sepsis. I saw my orthopedic Dr, and had MRI on Wednesday. The bad news is there is nothing they can do for my 10 torn leg tendons, the totally messed up degenerating back and nerve entrapment. I have to live with the pain. My doc kept apologizing. It’s not easy some days. If you saw me walk you would think I was 100 yrs old.

Next week, I’m back at Mayo. Yes – I mailed my ballot weeks ago and I’ll be there election week. I’m hoping all the testing and Dr appts distract me.
If you’ve been following me – you know a rib broke late last Fall. It was a spontaneous break. So, I started Fosamax for my bones. Another rib broke this Spring. They aren’t healing. I’ve had to quit the drug because it really messed with my esophagus. I can’t swallow pills or many foods. At night, it feels like an elephant sitting on my esophagus. I’m on a soft diet and lucky if I get 800-900 calories a day.

This summer, Mayo found too much calcium in my blood and high PTH levels. Next week is more testing, including a nuclear bone scan.

The only easy appointment will be with my voice therapist. (RA has trashed the little bone in my voice box). I first noticed it singing along in my car to my favorite old rock songs. Now, I’m lucky if I can hum along with Frank Sinatra.

So, that’s the latest on me. I promise to update my week at Mayo.

In the meantime:





  • Gladys J Gibson-Bunner Posted October 30, 2020 5:02 am

    We come from a strong powerful minded family, unfortunately our bodies seem to have a willful attitude of their own. Our minds say we can do anything and our bodies say “yeah? watch this!” It becomes a never ending duel between mind and body with neither being willing to call surrender. Please know that I keep you and Aunt M. in prayer. I love you Cuz just remember….“You do what you can for as long as you can, and when you finally can’t, you do the next best thing. You back up but you don’t give up.” ―Chuck Yeager

    • mm
      Carol Miletti Posted October 30, 2020 6:33 pm

      Thanks Gigi,
      I know I’m still able to walk because it is all ‘upstairs’ as in my mind willing me to. I actually told my Dr this on Wednesday and he agreed most ppl would be in a wheelchair by now.
      Just have to keep my mind strong now

  • Janice Smith Posted October 30, 2020 11:00 pm

    I am sorry that you are struggling so much and there seems to be no solution to many of your problems. That truly is unfortunate. I hear you on missing your family. Our kids have cancelled holiday celebrations this year. I know that this is the wise thing for families to do, but it is sad that it is necessary. Keep us advised as to how your week goes at Mayo. Stay strong and know that you have a bevy of friends pulling for you.

    • mm
      Carol Miletti Posted October 31, 2020 5:07 am

      Thanks Jan,
      I would love to say I’m not struggling anymore- but, that would not be true.
      I have so many tests coming up – the only problem is I don’t want the results.

      • England Laurie Posted November 22, 2020 3:30 am

        Hugs, my little buddy

  • Carla Sparkler Posted November 15, 2020 11:34 am

    Thinking and praying for Carol

    • mm
      Carol Miletti Posted November 25, 2020 2:59 am

      Thanks Carla,
      This is not easy for anyone. It seems especially hard on grandparents and people with rare disease.

  • England Laurie Posted November 22, 2020 3:29 am

    Little buddy, I am so sorry that life has given you more….As I read your blog about how we know how to hibernate well, skip special events even when we dont want to. My daughter is doing Thanksgiving at her new place on Sunday. My immo told me no, you cant go….Then the party got cancelled and then back on for 6 only. It is actually 8 now. My granddaughter will be there, her dad n wife, the boy friends n 2 more. I love these people so much…Holly told me to come. I didn’t do my ivig on Thursday…paxil down due to side effects we spoke about. Now I am all nerves trying to please everyone, but right now I can’t even please myself….Love you my little buddy n your words.

    • mm
      Carol Miletti Posted November 25, 2020 2:58 am

      Little Buddy,
      You KNOW it’s NOT safe-don’t go. There will be a time, a day, when this is all behind us and we can celebrate with our loved ones.
      I know how painful this is- I’m experiencing the same thing.
      It’s hard enough being a Zebra in normal times- but, now, it’s even riskier.
      Don’t take the chance.
      Love you

  • Randi Rodman Posted November 22, 2020 12:45 pm

    Just read your blog with interest. I did not realize your struggle had increased. Struggle between the body is real. I would implore you to have more outdoor visits and hugs with your children when able. The risk and the Seratonin in release in your brain for love and happiness is real. I saw my kids this past Summer deck side at our home. Small visits carried me through until today. I also could only see my Mother thru a glass window and wave and blow kisses. She passed, alone,…with Failure to Thrive and other complications. These are tough times. We Zebras are tough people. But, we also need touch, hugs, and Love. I send hugs and warmth to you today,…and will keep you in my Prayers

    • mm
      Carol Miletti Posted November 25, 2020 2:55 am

      Thanks Randi,
      I will try to see them before the snow piles up. I can’t tell you how lonesome I am for them.
      I live for their hugs and smiles.
      Thanks for your encouragement

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