Daily digest, coffee & connections: Meet @nohrt4me

TERESA: What brought you to Mayo Clinic Connect?

@nohrt4me: I was diagnosed in 2014, at age 60 with essential thrombocythemia with CALR mutation (ET-CALR) a myeloproliferative neoplasm. Mayo Clinic has some of the best myeloproliferative neoplasm (MPN) experts in the field. They not only study MPNs, but look at patient quality of life. 

While searching for information about ET-CALR, I discovered Mayo Clinic Connect. I like that the conversations here have moderators, which keeps the misinformation to a minimum.

TERESA: What motivates you to take part in Mayo Clinic Connect?

@nohrt4me: Being a retired senior citizen with a chronic disease can sometimes make you feel useless. If I can respond to someone else’s questions or boost their confidence, that's a good day. Other Connect-ors' experiences give me confidence that my oncologist is providing good care. Feeling like you are in good hands is a special concern for those of us with rare, chronic diseases that we will need to manage our entire lives. 

TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@nohrt4me: I joined Mayo Clinic Connect in 2022. I had participated in online support groups before, but they often attracted people trying to sell alternative treatments. Mayo Clinic Connect is mostly free of the hucksters. 

TERESA: What support groups do you participate in?

@nohrt4me: I primarily take part in the discussions in the Blood Cancers & Disorders support group. I also participate in discussions where I can add value in the Cancer: Managing Symptoms support group.

TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.

@nohrt4me: Friends and family are great, but they really don’t understand chronic cancer. My sister-in-law asked me a few years ago why I was still taking oral chemotherapy since I wasn’t getting better. People on Mayo Clinic Connect understand why questions like those drive us nuts. I usually look at the daily digest first thing every morning with my coffee to remind myself that there are others who “get it.”

TERESA: What energizes you, or how do you find balance in your life?

@nohrt4me: Finding energy is the daily challenge of everybody with blood cancer. I have severe scoliosis, so I started with deep breathing, then chair yoga, and I now do gentle floor mat yoga. It helps with energy levels, sciatica, and “the blues.” I also keep my circulation going with an exercise “bike to nowhere.” And sitting outdoors in the fresh air is also a tonic. Having that routine helps me keep it together. 

TERESA: Tell us about your favorite pastime or activity.

@nohrt4me: I am a retired college English teacher, so I read, read, read! Literacy and freedom to read issues are really important to me. I also do a lot of knitting for charity, mostly baby blankets. I also love old movies. Joan Crawford in “Sudden Fear,” Bette Davis in “Three on a Match,” Edward G. Robinson in “Brother Orchid.”

TERESA: Do you have a favorite quote, life motto or personal mantra?

@nohrt4me: St. Catherine of Siena said, “We are in God and god is in us, as the fish is in the sea, and the sea is in the fish.” I really like that idea that God is in all creation, we are part of it, and that we are all interwoven with the divine, sick or well.

TERESA: What food can you simply not resist?

@nohrt4me: Cheesecake. Mmmmm!

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