In arguing, the truth is always lost: Meet @jeffrapp

May 30 8:29am | John, Volunteer Mentor | @johnbishop | Comments (16)

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.

JOHN: How did you find Mayo Clinic Connect? What motivates you to take part in the community?

@jeffrapp: Like many other newly diagnosed patients with idiopathic small fiber neuropathy (SFN), I was confused, anxious, and looking for answers to questions like why, what will happen, and mostly, what can I do to relieve my symptoms, since nothing medical was working. I looked for an online resource and was attracted by the word Mayo in the name.

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

@jeffrapp: Members of Mayo Clinic Connect  are all fellow sufferers. There should be very little or nothing to hide. The more you reveal, the more you are likely to get helpful answers.

JOHN: What groups do you participate in?

@jeffrapp: I stick to the Neuropathy support group. 

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

@jeffrapp: My most meaningful exchanges have been with you, @johnbishop. You’re a font of knowledge. You respond nearly instantly, are oriented to science, and still impart hope and offer encouragement to try new things.

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

@jeffrapp: I was most surprised by how many participants have not been helped much or at all by the “standard” medical treatment. I’ve had the same experience, and I have to admit I am frustrated and disappointed. This leads to distrust and even anger at the medical establishment. Having spent my career in medicine, I can say truthfully that almost all the doctors, nurses, techs, etc. are skilled, caring people. They are also human, and many get worn down, like patients do, helping people manage conditions for which is no cure, often no known cause, and can be so varied in how they present differently in different patients.

Anger at them does no good, and in fact is counter productive.

JOHN: What energizes you? How do you find balance in your life?

@jeffrapp: I am energized by still being able to participate in sports (mainly bicycling) and other physical activities. I have been able to come to terms with my progressive illness to an extent, which I have come to believe is the best “treatment” for me. Knowing that I have at least some control gives me hope and balance.

JOHN: Tell us about your favorite pastime or activity.

@jeffrapp: As noted, my favorite activity is bicycling. I am still able to go on 30-mile rides, especially when I am with friends to distract me from the burning in my feet from wearing bike shoes. I usually stop and pour water on my feet to cool them. I have even carried frozen gel pads for the same purpose. I also enjoy kayaking and can do some hiking. Previously, I was a big hiker, skier, etc., but those days are gone.

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

@jeffrapp: I have two: “Don’t sweat the small stuff” and “In arguing, the truth is always lost”. I wish I could say I follow them all the time.

JOHN: What food can you simply not resist? 

@jeffrapp: Almost all of it, but here are a few of my favorites: ice cream, cashews, and my wife’s chicken cacciatore. 

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

@jeffrapp: Robert Redford, of course. He even looks a little like me.

JOHN: What do you love about where you live or vacation?

@jeffrapp: I live in the Northern California wine country. I have traveled a lot and can’t seem to find a better place to live, although I’ve tried. Rolling hills, green redwood forests, miles of beautiful ocean beaches, vineyards, blue skies (when there aren’t any fires). What’s not to love? 

JOHN: Puppies or Kittens?

@jeffrapp: Both!

See more Member Spotlights.

Interested in more newsfeed posts like this? Go to the About Connect: Who, What & Why blog.

@jeffrapp, I just wanted to add that I thoroughly enjoyed working on your spotlight interview with you and learning a little more about you. I especially like your quotes and I definitely need to keep working on the second one because I too have found arguing can be a lost cause and there are better ways to communicate. Hoping your day is an exceptional one!

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@jeffrapp It is so nice to see the Spotlight on you, sir! I've enjoyed getting to know you better, and admire your tenacity in continuing to persevere with what you CAN do versus what you can't do. 30 mile rides are awesome! My husband can no longer run because of bad knees, but loves to cycle. Moderation is key in avoiding the 'ole push/crash "cycle". Pun intended – haha!

Thank you for your professional insight and noting that doctors, nurses, techs are skilled, caring humans that get worn down too. You are so right that anger is counterproductive. Forgiveness is a valuable tool that helps our self-care success, and to be able to move forward.

I look forward to seeing you around these parts, Jeff. Happy cycling!

P.S. I love that you said Robert Redford looks a little like you and not the other way around. 🤣

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Hello @jeffrapp it was nice to hear a bit about you. I am happy to hear you still bike! That is awesome. People laugh at me when I say winter is awesome because it is easier to cool my feet. Now I can tell them about you pouring water. You are an inspiration and I am glad to get to know you a bit.

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Right on Mr. Rapp. Great to see your picture and I see a gentleness there. Where do you hide all the great "laugh-ins"?

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Excellent interview, very motivational. While our diagnosis and physical limitations differ, I certainly can relate to a lot of what you said. And yes, I can see where Robert Redford took some of your looks haha!

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@jeffrapp It’s very nice to e-meet you! I’m with the autoimmune group where so much is undiagnosed and untreated because science hasn’t figured it out yet. But, I like helping people find answers! It sure sounds like you live in a beautiful part of the country—except for the possibility of fires. Thank you for being on Connect!

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Hello @jeffrapp

What a delightful interview! I don't spend time in the Neuropathy discussions, so I really enjoyed getting to know you. All of us on Connect have something in common: we found support and camaraderie as we deal with our various health issues. It sounds as if you have made peace with neuropathy and that you are living your best life in spite of the limitations of this health problem! Congratulations on that accomplishment.

Thanks also to John, @johnbishop, for helping to provide this interview.

PS I also agree with the Robert Redford reference🙂

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Congratulations as the Spotlight focuses on you and your journey.
"It sounds as if you have made peace with neuropathy and that you are living your best life in spite of the limitations of this health problem!" 👍🏼
Bicycling gave me a sense of freedom. Keep pedaling as long as you can. Bravo!

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I really enjoyed reading about you! I have neuropathy in my feet from chemo for breast cancer. It is so frustrating because I can't drive, but the local Ride Service busses come here to get me free for appointments of all kinds. I'm 80 and live alone 8 miles from town in Templeton ,California on 22 acres. This is also wine country and is beautiful. I have a little vineyard. A beautiful view seems to beat through the depression!

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That was a beautiful story.. thank you for sharing the Interview and Insights
Monika

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Thank you for your post, I too struggle with idiopathic neuropathy, burning feet. Somedays are better than others – which I do not understand. I am starting a journal of when they hurt and when they do not, to try and see if correlates with what I am eating. I’m still quite young at 55. However, i have worked very strenuous jobs in my past, such as 14 years of roofing, drywall, painting mechanic work, landscaping, and many other things. I wonder sometimes if the pain originates in my back. What makes it hard is not having enough money to survive and go to doctors.
Thank you again for your story.
Catherine

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Hi @jeffrapp, I enjoyed meeting you through your post, and your favorite saying stays with me. It's so true. I wish I had known that when I was younger. Thank you for sharing your story. Teri

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