Gently down the stream: Meet @marye2

Aug 31, 2023 | John, Volunteer Mentor | @johnbishop | Comments (21)

Marye2, member spotlight

JOHN: What brought you to Mayo Clinic Connect? 

@marye2: I found Mayo Clinic Connect a few years ago. I had recently discovered that I was not an outlier with mixed connective tissue disease (MCTD). Being someone who had found their own way through very strange symptoms, I had adapted with practical changes to diet, exercise and lifestyle as well as having great doctors who prescribed what worked. I’ve had MCTD for a couple of decades at this point. I do not have medical training, just personal experience. When I was diagnosed in 1996, the doctor just gave me a brochure. So my hope is to be there to offer support to others on the journey and Mayo Clinic Connect offers that for me!

JOHN: What motivates you to take part in the community?

@marye2: The community is very friendly and the moderation makes it work. People are genuinely concerned for those who share their journeys with a variety of diagnoses. It is important to me to help others make the connections in practical ways they can use along the journey. I often comment in the community but I also like the choices of being able to send a reaction of hug, helpful and like. 

JOHN: What groups do you participate in?

@marye2: I check out various areas with new updates to see if I have had similar experiences, like autoimmune conditions, dry eye/mouth, hypermobility and now caregiving and dementia as that has come into my family. So my main support groups are:

I have been able to learn and gain perspective from others, which has been very helpful.

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

@marye2: Last year, I was diagnosed with lung nodules and ground glass and it was very easy to find others who were in similar situations—some further along than my new diagnosis. It helped me with acceptance as my own situation has continued. Connecting with others alleviated so much worry and distress about the unknown. A couple of people asked questions later about my progress and that was a great surprise.

JOHN: What surprised you the most about Mayo Clinic Connect?

@marye2: I find the community so well run, both in its algorithm of finding specific areas and in its moderation. It is so great to have a place to go for advice and information (great links from other members) that is so right on.

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

@marye2: Like everyone, it is a slippery slope for me to find balance in life. I am now retired, but often am more task based than I should be. It is important to spend time with people and relationships, time outside in nature and to smell the roses. I am also about adapting and coping with what is, so people see me doing things that probably should not be done. I love volunteering, traveling, learning and reading.

JOHN: Tell us about your favorite pastime or activity.

@marye2: I love spending time out in the desert and taking long walks in a nearby canyon. I had four great years of doing notation of petroglyphs with a group of citizen archaeologists—we would climb up a “boulder” hill and spend the day drawing, measuring and photographing. Still looking for a substitute for that, as I’ve aged out. I traveled to Italy and Malta last year and it was nearly the same sense of wonder all the way. I also spend time volunteering for a food pantry and a group that provides household items for people who are rehoming after rehab, homelessness or domestic violence.

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

@marye2: I like to remind myself when it is too much about “gently down the stream” and I’ll sing that Row, Row, Row Your Boat song. And, “Not all of us can do great things. But, we can do small things with great love.” Small changes can have great effects.

JOHN: What do you appreciate the most in your friends?

@marye2: Laughter, kindness and shared experiences and thoughts.

JOHN: If Hollywood made a movie about your life, who would you like to see cast as you?

@marye2: I always thought I would be Deborah Kerr, from the 1950s movies. But, no ballrooms or Cary Grant, so far!

JOHN: Puppies or kittens?

@marye2: I have two lap cats

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@marshasanger

Where can you recommend a person who KNOWS how to treat CIRS. I'm so desperate for answers and only have the internet information. Afraid of scams online and how do I know who’s for real?

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I like webmd, cleveland clinic and some others. But, most of us chase symptoms, so you might gain insight from MCTDfoundation.org, the Lupus Handbook, Terry Wahls writings, etc. Many symptoms can be alleviated with practical changes in diet, movement and basic meds.

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