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.
Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
What a wonderful take on life, @marye2 …”Gently down the stream”. I’d never given much thought of a deeper meaning to that childhood song. It was always just a fun round to sing with friends. Now it’s taken on a new life in my head and a new ear-worm for me today! Thank you for sharing your philosophy and a bit of your story with us and @johnbishop! 🎶Life is but a dream…🎶
Hi Mary @marye2, Thanks for letting us get to know you a little better. Now @loribmt has started my day with a new ear-worm - yes, Life is but a dream... Hoping your day is a great one!
Thank you for sharing your story and your wonderful coping skills @marye2! Like so many others, you came here looking for support and you ended up offering support. Your life sounds so well balanced even though you have the condition you have, you are not letting it stop you from living, learning, sharing and caring about others. Great interview @johnbishop. I am not about to let the song "Row, row, row your boat, gently down the stream..." get stuck in my head. That is what I am saying to myself anyway!
@marye2 I’ve been so thankful for all of your posts in the autoimmune and caregiver groups! They are so helpful! I’m also intrigued with your paleontology outings. How did you ever find such an interesting line of work?
I have to go put some music on so I can get “life is but a dream” out of my head!
Welcome to Connect! Becky
@marye2 Congratulations on your Spotlight! I admire your outlook on adapting and coping with what is. You certainly seem to have the tools needed to squeeze the best "glimmers" out of life. Connect is lucky to have you.
https://www.mamamia.com.au/what-are-glimmers/
Petroglyphs (aka rock art) are various notations from native americans of a thousand or so years ago in Arizona. They "pecked" the designs into rock for ceremonial and other reasons. There are a few painted ones, but we were notating the petroglyphs. I have an archaeology degree, which I never used, but this volunteer opportunity came my way. Sending a link. https://www.nps.gov/sagu/learn/historyculture/upload/Signal-Hill-Petroglyph-Brief.pdf
So nice to meet you, @marye2
Thanks for sharing your journey with all of us here on Mayo Connect. You give us all a new perspective on rowing gently down life's many streams!
Marye - I love the Gently Down the Stream inspiration! You describe a lot of our medical journeys and admiration of Mayo Connect very well. Sometimes I catch myself swimming against the current and will now think of “Row Row Row Your Boat….” Thanks for sharing your story and motivation to start my day!
@marye2 The image of "gently down the stream" is comforting and buoying [oops, pun intended, I guess!] We float along on life, guiding ourselves along the stream, missing the rocks as much as possible, watching the shore for a decent landing spot. Being here on Mayo Clinic Connect connects us.
Thank you for your insight, and the information about your passions and the petroglyphs.
Ginger
Thank you so much, marye2, for your up-lifting insights.
Your link was very informative. Fascinating work!
May you "miss the rocks". Go "gently" !
christine