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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@johnbishop

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!

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Hua , well wishes for all.

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Thank you for sharing @marye2. It sounds like you are living your life to the fullest despite the health issues. I do love your use of the Row Your Boat song and now I will think of you any time I wash my hands using this song for timing! Have a gentle journey.
Susan

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@marye2 it was nice to read a bit about you. I can understand why finding a replacement for the petroglyphs is a challenge. There were some along the rim rock around Billings, Mt. They used to be open to the public, but of course a few bad actors had changed that before I left there more than 25 years ago. They are fascinating to see, I envy you, your experience.
I love your saying about ; Not everybody can do great things, but everyone can do small things with great love. What a fantastic reminder for our daily life, thank you for that.

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in reply to @marye2 What an inspiration you are! It sounds like you have just the right attitude to deal with those afflictions that might be life limiting. We have many things in common, and I thank you for sharing your story.

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You touched my heart and made it smile. You are a very special person and it was so nice "getting to know you". "Gently down the stream" says a lot about you.
P

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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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@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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Hi Marsha,
You are right to be wary of scams. If it sounds to good to be true, then it is probably a scam.

If you would like to inquire about an appointment with a Mayo Clinic specialist, you can request an appointment here: http://mayocl.in/1mtmR63

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Lovely article how to keep on rolling . Kudos to marye2. Rockabyern1

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@karukgirl

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!

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Thanks I am scheduled for an upper endoscopy with the scraping for esophageal problems. I like your enthusiasm and the row row row your boat song. It helps my depression over my various illnesses. DIABETIC ON INSULIN doing fine, neuropathy escalating, Get a headache occasionally ..thanks for the encouragement. IT HELPS..MargaretOB

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Thank you marye2. ‘Gently down the stream’ puts me in perspective on how I should take life on a daily basis. I’m 3CKD. A medication brought down my eGFR 10 points. After seeing the renal dietician I got so anxious to engage in a more stringent diet. But with your ‘gently down the stream’ motto, I taking it literally with my daily diet and routine. Then I get lab tests 3 months from now. Thank you for being here in Mayo Clinic Connect in sharing your experiences and thank you for being you.

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