About Connect: Who, What & Why

Mayo Clinic Connect is an online community that connects people. In the About Connect page, find out more about members, mentors and the community. Meet the team of Mayo Clinic moderators and how the community is managed.  Review the community guidelines and learn how you can get the most from your Connect experience.

Twice a month, a member of your Connect community is featured in the Member Spotlights. Follow the About Connect page to get updates about members and the community.

PUBLIC PAGE
Mar 16, 2018

Meet @hopeful33250: Striving so No One Feels Alone with Personal Health Challenges

By John, Volunteer Mentor, @johnbishop

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.

Teresa, mentor

JOHN: Teresa, what brought you to Mayo Clinic Connect? What motivates you to take part in the community?

@hopeful33250: I came to Mayo Clinic Connect after the diagnosis of my third neuroendocrine tumor (NET). I was feeling discouraged and had not been successful in finding others with this rare form of malignancy. I Googled support groups for NET and saw a posting for Mayo Clinic Connect.

I am motivated to take part in the community because I feel it introduces me to people who are dealing with very difficult situations in life — both physical and emotional. I find strength in their stories. Once in awhile, I’m even able to support others who are feeling burdened by their situations — I consider it a win-win relationship.

Connect is a safe place to converse with others. The moderators maintain an environment that reflects kindness and support. They manage to keep the ground of Connect cultivated so that we can all grow stronger together.

JOHN: What groups do you participate in?

@hopeful33250The two groups that I work with as the volunteer mentor are the Neuroendocrine Tumors (NETs) and Parkinson’s Disease groups, as I have personal experience with both. However, I also venture into other areas where I find strong people who share their experiences, their struggles and, of course, their strengths.

I especially enjoy following and posting with the Transplants group and the Mental Health group. In these groups there are many very strong members dealing with significant problems, and sometimes lifelong problems, who are working on building up their own strength and support system for their lives. I am pleased to watch their growth (and mine) as we share together.

JOHN: What surprised you the most about Connect?

@hopeful33250What surprised me was the way so many people are willing to share just where they are at the present time (and often that changes from day to day) as they face different challenges in their lives. I also appreciate the way the community of Connect strengthens each member. Members help each other, give encouraging words of advice and share from their own experiences. In this way, no one ever feels alone in their personal health challenges.

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

@hopeful33250I’m energized by living a balanced life. I’m somewhat of an introvert, so I do find energy by finding some time alone — that includes reading and devotional time. I also find balance by exercise. I belong to several exercise groups, including a Parkinson’s dance class and a sitting Tai-Chi class, which all help with coordination, balance and range of motion, which are important to those of us who have chronic health problems and are aging.

In addition to alone time, I have a great group of friends and family that I get together with. We enjoy conversation, movies, plays and music. My relationships at church are especially important to me, as it helps me to grow my faith.

JOHN: Tell us about your favorite pastime or activity.

@hopeful33250I also enjoy music and activities surrounding music. I’m part of a therapy choir that brings music to folks with closed head injuries as well as other neurological problems. Music has a way of bringing a lift to everyone’s health as well as their spirits.

Since I love to read, I’m also part of a book discussion group at the local library. This encourages me to read at least one book a month (but usually I read more than that).

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

@hopeful33250Knowledge is power and attitude is everything!

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

@hopeful33250Their kindness, their loyalty and their support. It sets an example for me to do likewise.

See more Member Spotlights.

 

To hopeful…Thank you for your comments about neuroendocrine cancer. It has only been through these kind of support groups that I ended up at Mayo Clinic where I was diagnosed and my life saved. I have been involved with The Carcinoid Cancer Foundation and The Neuroendocrine Foundation. You might be interested in State if CT bill #5297 advocating additional medical education for doctors to detect rare gastro and other cancers.

@musicflowers4u

To hopeful…Thank you for your comments about neuroendocrine cancer. It has only been through these kind of support groups that I ended up at Mayo Clinic where I was diagnosed and my life saved. I have been involved with The Carcinoid Cancer Foundation and The Neuroendocrine Foundation. You might be interested in State if CT bill #5297 advocating additional medical education for doctors to detect rare gastro and other cancers.

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@musicflowers4u I am glad that this website has been helpful to you! Thank you for the information about the bill that would advocate additional medical education for doctors to detect rare cancers – that is certainly needed. I am glad that you were treated at Mayo and found good care.

How are you doing now?

Teresa

@musicflowers4u

To hopeful…Thank you for your comments about neuroendocrine cancer. It has only been through these kind of support groups that I ended up at Mayo Clinic where I was diagnosed and my life saved. I have been involved with The Carcinoid Cancer Foundation and The Neuroendocrine Foundation. You might be interested in State if CT bill #5297 advocating additional medical education for doctors to detect rare gastro and other cancers.

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I just had a Gallium 68 Dotatate scan and my Dana Farber oncologist reports no new neuroendocrine cancer from the top of my head to my knees. I do have pain but I have a lot of adhesions and a large abdominal hernia which are chronic problems. I sent in my report to Mayo as they requested regarding any returning cancer. Thanks for your concern.

@musicflowers4u

To hopeful…Thank you for your comments about neuroendocrine cancer. It has only been through these kind of support groups that I ended up at Mayo Clinic where I was diagnosed and my life saved. I have been involved with The Carcinoid Cancer Foundation and The Neuroendocrine Foundation. You might be interested in State if CT bill #5297 advocating additional medical education for doctors to detect rare gastro and other cancers.

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My comment to these conversations would be– funding research on ALL rare (or any) diseases should come before drug rehab, sex-change operations, and a lot of the other nonsense that the government spends tax dollars on.

@musicflowers4u

To hopeful…Thank you for your comments about neuroendocrine cancer. It has only been through these kind of support groups that I ended up at Mayo Clinic where I was diagnosed and my life saved. I have been involved with The Carcinoid Cancer Foundation and The Neuroendocrine Foundation. You might be interested in State if CT bill #5297 advocating additional medical education for doctors to detect rare gastro and other cancers.

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@musicflowers4u What a wonderful report! All of us who have dealt with NETs can appreciate this good news.

How do you deal with the pain from the adhesions? Is there any possibility that you can treat the large abdominal hernia and thereby reduce the pain from that?

Teresa

I have been advised by all doctors I have consulted that surgery risk of infection or other complications is worse than living with my current status. I do run a risk of bowel obstruction though so in that case emergency surgery would be involved. My pain mostly involves the process of digestion and elimination so my diet is key, lots of fruits and veggies, yogurt, and when I am in real distress I rely on Kombucha to get me back on track. A side note about nausea and diarrhea with flagl – I was prescribed Colclestramine (sp?) which is given to cancer patients to control nausea and vomiting. (that was years before I was diagnosed with cancer.)

@musicflowers4u I hope that all continues to go well without ever needing emergency surgery.
Does Kombucha have a lot of caffeine? Also I tried to look up Colclestramine and could only find it as a cholesterol lowering med. The med you used for nausea must be spelled differently.

Thanks for the good information! We all do learn from each other at Connect.

Teresa

@musicflowers4u

I have been advised by all doctors I have consulted that surgery risk of infection or other complications is worse than living with my current status. I do run a risk of bowel obstruction though so in that case emergency surgery would be involved. My pain mostly involves the process of digestion and elimination so my diet is key, lots of fruits and veggies, yogurt, and when I am in real distress I rely on Kombucha to get me back on track. A side note about nausea and diarrhea with flagl – I was prescribed Colclestramine (sp?) which is given to cancer patients to control nausea and vomiting. (that was years before I was diagnosed with cancer.)

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@musicflowers4u Does Kombucha help with diarrhea or with constipation? Most have a trace amount of alcohol in them so I am not supposed to drink those. I understand why I could not prior to my liver transplant but I'm not sure now if it's because alcohol is not good for any liver, or if it perhaps reacts with the immunosuppressants. Does anyone here know about that?

@hopeful33250

@musicflowers4u I hope that all continues to go well without ever needing emergency surgery.
Does Kombucha have a lot of caffeine? Also I tried to look up Colclestramine and could only find it as a cholesterol lowering med. The med you used for nausea must be spelled differently.

Thanks for the good information! We all do learn from each other at Connect.

Teresa

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I agree with your analysis of the drug but that’s what I was given. I haven’t been concerned with caffeine content of Kombucha so don’t know but it has billions of good bacteria and it works for me. It does have a bit of natural alcohol from fermentation so I don’t drink it and drive or operate machinery. Etc.

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