Mayo Clinic Champions

Mayo Clinic Champions share their knowledge and experience to help other patients make the best choices for their care. Champions are committed to making a difference in the lives of others facing complex health issues and always advocate for patients.

PUBLIC PAGE
Sep 24, 2018

Monthly Mission: Why did you become a Champion?

By Tony Hart, Champion Specialist, @TonyHart87

Champion Badge

Mayo Clinic Champions make a difference for others. They understand what others are going through with their health care journey because they’ve been there. People join the Mayo Clinic Champions program for many reasons, but the program would like to hear why you chose to join.

Some Champions join to:

  • Reach others to help them find answers
  • Learn more about Mayo Clinic
  • Share their experiences to show others are not alone
  • Spread the news about what Mayo Clinic has done to help you

Or there are many other reasons that may be unique for you. Share why you became a Mayo Clinic Champion in the comments below or email the Mayo Clinic Champions program.

Liked by lioness

I became a Mayo Clinic Champion because I feel that I have been through so much, I like to encourage people and let them know they are not alone and if I can do things then so can they. I think one of my biggest accomplishments has been-after living almost my entire life with obesity, In 2006 I was almost 600lbs and a patient at a care center recovering and was told that I could no longer go on any van or buses for wheelchair transportation. At first I was pretty upset, then I got mad. I decided I was going to show them, so with the approval of my RN, Doctor, and dietician, I started on a low carbohydrate/high protein diet. I lost around 200lbs in 18mo.;however, then I went through some "stuff" and gained 50lbs. So, I basically stayed around the same weight from 2006-2012. In 2012, I had gastric bypass surgery. I lost another 200lbs in the first year. Since I could not walk at this time, my exercise consisted of what I could do in my bed and in my wheelchair. I just had my 7yr surgery anniversary appointment yesterday. Eventhough I have gained about 40lbs, my doctor is extremely happy because I have still lost over 75% of my excess body weight. He is also happy with my blood work and my continual general positive progress. I just like to encourage people that are obese, that they too can do what I have done if they want to. This has not been easy even with gastric bypass. Gastric bypass is NOT the easy way out it is a tool that I can use to lose weight. However, the most important tool through this whole progress has been my head. I have had to figure out why I was eating, and TRY to change that habit. It is NOT easy. This is a day-to-day, meal-to-meal, life of choices. That is why this is NOT a DIET. This is a New life journey is a different direction. I have learned that I am not always going to make the right choices, and "life happens" with things we can't control. I just need to remember that Making a bad food choice does NOT make me a BAD person. I just need to get back "on track" making "good food choices". I do really wish I could reach as many people as I can and just let them know that if I can do this-so can they. I do know, however, that people have to be ready for their own journey, and if they are not ready, nothing I say will make a difference.

COMMENT

I became a Mayo Champion because I advocate for research and I want to share how Mayo has helped me maintain my quality of life with my disease. I believe sharing my health information and experiences will help others in similar circumstances. I have a rare condition called Ocular Myasthenia Gravis. I also had a unusual lifestyle hobby of cycling long distances, and not having any family medical history because I was adopted as an infant in a closed adoption. Those things , Ocular MG and exercise (and no medical history) do not go together and were causing me a lot of issues medically. In this technology age of medicine, its like my providers didn't know where to look or where to start because I didn't know any information about my biological parents health circumstances. I know first hand that so much of medicine is determined by your parent's health histories, and when that is missing, there's a gaping hole in the care process.

I've had the amazing opportunity to be a research study participant at an NIH research study in Bethesda MD, WOW, is that a neat experience. I stayed overnight in Bethesda and spent 2 days in a study. From there, I went to Mayo and the neurology department in Rochester and there they did a thorough job testing and pinpointing my condition. I was so blessed with those experiences, I want to share them with others and show how research participation promotes wellness and healing. I advocate for volunteering and sharing your medical condition and health information with others, it's helpful for everyone to understand what's going on, and I believe it improves the quality of care that you receive from your doctors.

COMMENT

I was curious to see what this program was all about when I saw that our Hearing Loss Association of America was teaming up with Mayo Clinic. I thought this was a terrific opportunity to collaborate with a wonderful health care system. I have experience so much of life that perhaps I could benefit from this as I am sure others could as well. Having had to endure countless difficulties and learning how to deal with the thorns in my sides providing plenty of dialog to pull from for this type of platform.

COMMENT
@shrinkerbell

I became a Mayo Clinic Champion because I feel that I have been through so much, I like to encourage people and let them know they are not alone and if I can do things then so can they. I think one of my biggest accomplishments has been-after living almost my entire life with obesity, In 2006 I was almost 600lbs and a patient at a care center recovering and was told that I could no longer go on any van or buses for wheelchair transportation. At first I was pretty upset, then I got mad. I decided I was going to show them, so with the approval of my RN, Doctor, and dietician, I started on a low carbohydrate/high protein diet. I lost around 200lbs in 18mo.;however, then I went through some "stuff" and gained 50lbs. So, I basically stayed around the same weight from 2006-2012. In 2012, I had gastric bypass surgery. I lost another 200lbs in the first year. Since I could not walk at this time, my exercise consisted of what I could do in my bed and in my wheelchair. I just had my 7yr surgery anniversary appointment yesterday. Eventhough I have gained about 40lbs, my doctor is extremely happy because I have still lost over 75% of my excess body weight. He is also happy with my blood work and my continual general positive progress. I just like to encourage people that are obese, that they too can do what I have done if they want to. This has not been easy even with gastric bypass. Gastric bypass is NOT the easy way out it is a tool that I can use to lose weight. However, the most important tool through this whole progress has been my head. I have had to figure out why I was eating, and TRY to change that habit. It is NOT easy. This is a day-to-day, meal-to-meal, life of choices. That is why this is NOT a DIET. This is a New life journey is a different direction. I have learned that I am not always going to make the right choices, and "life happens" with things we can't control. I just need to remember that Making a bad food choice does NOT make me a BAD person. I just need to get back "on track" making "good food choices". I do really wish I could reach as many people as I can and just let them know that if I can do this-so can they. I do know, however, that people have to be ready for their own journey, and if they are not ready, nothing I say will make a difference.

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Hey @shrinkerbell, What a great new life journey you are on. You really are an expert by experience and have a lot of insight that is valuable for others on their own journey. Keep up the great work. I'm sure you are making a difference.

COMMENT
@Erinmfs

I became a Mayo Champion because I advocate for research and I want to share how Mayo has helped me maintain my quality of life with my disease. I believe sharing my health information and experiences will help others in similar circumstances. I have a rare condition called Ocular Myasthenia Gravis. I also had a unusual lifestyle hobby of cycling long distances, and not having any family medical history because I was adopted as an infant in a closed adoption. Those things , Ocular MG and exercise (and no medical history) do not go together and were causing me a lot of issues medically. In this technology age of medicine, its like my providers didn't know where to look or where to start because I didn't know any information about my biological parents health circumstances. I know first hand that so much of medicine is determined by your parent's health histories, and when that is missing, there's a gaping hole in the care process.

I've had the amazing opportunity to be a research study participant at an NIH research study in Bethesda MD, WOW, is that a neat experience. I stayed overnight in Bethesda and spent 2 days in a study. From there, I went to Mayo and the neurology department in Rochester and there they did a thorough job testing and pinpointing my condition. I was so blessed with those experiences, I want to share them with others and show how research participation promotes wellness and healing. I advocate for volunteering and sharing your medical condition and health information with others, it's helpful for everyone to understand what's going on, and I believe it improves the quality of care that you receive from your doctors.

Jump to this post

Hello @user_chdb5e8ac, Thanks for being a Champion. I'm glad to see that research has helped you with your health. It's great you are able to share about your rare condition and be a voice for it. It might be just what someone else needs who has another rare condition or maybe even Ocular MG. A unique perspective that is bound to be helpful.

COMMENT
@nurseheadakes

I was curious to see what this program was all about when I saw that our Hearing Loss Association of America was teaming up with Mayo Clinic. I thought this was a terrific opportunity to collaborate with a wonderful health care system. I have experience so much of life that perhaps I could benefit from this as I am sure others could as well. Having had to endure countless difficulties and learning how to deal with the thorns in my sides providing plenty of dialog to pull from for this type of platform.

Jump to this post

Hi @nurseheadakes, Excellent to have you come and team up with Mayo Clinic. I'm sure your difficulties and experience will be able to help others with their journey. I hope you are finding Champions and Connect as helpful tools for you and for helping reach others.

COMMENT

I became a champion to be able to connect with others in similar situations and, perhaps, be able to help even one person through my experiences. I have been diagnosed with so many things (migraines, endometriosis, fibromyalgia, hypothyroid, idiopathic hypersomnia, etc.), I feel alone a lot of the time. I am lucky enough that I have a support system, but I feel like I am letting everyone down most days.

COMMENT

I become a Mayo Clinic Champion after hearing Mayo Clinic Social Media Network Director Lee Aase speak at a Rare Disease event. I'm not a patient, but my four-year-old son died of the undiagnosed and rare genetic birth defect Isolated Congenital Asplenia (he was born without a functioning spleen, which left him with a compromised immune system). As President of the newly formed 501(c)(3) T.E.A.M. 4 Travis (Together Ending Asplenia Mortality), I am grateful to be part of an amazing medical organization like the Mayo Clinic. Through membership in their Social Media Network, we hope to bring awareness of this rare disease to many people, seeking others who may be impacted by ICA and furthering medical research through fundraising and advocacy. I look forward to engaging with patients, providers and other non-profit leaders who use the Mayo Clinic Connect and Mayo Clinic Social Media Network.

COMMENT
@TonyHart87

Hi @nurseheadakes, Excellent to have you come and team up with Mayo Clinic. I'm sure your difficulties and experience will be able to help others with their journey. I hope you are finding Champions and Connect as helpful tools for you and for helping reach others.

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Thank you. I am finding that my encyclopedia of firsthand knowledge and the road of experiences that I have gained along the way have indeed helped me and I am excited to pass that on to others. Helping others has always been my mantra since nursing runs in my veins like my maternal grandmother and teaching like my parents. Life is full of surprises and opportunities to make a difference in my life as well as others. The glass may be half full but it's not empty!

COMMENT
@sutter14

I became a champion to be able to connect with others in similar situations and, perhaps, be able to help even one person through my experiences. I have been diagnosed with so many things (migraines, endometriosis, fibromyalgia, hypothyroid, idiopathic hypersomnia, etc.), I feel alone a lot of the time. I am lucky enough that I have a support system, but I feel like I am letting everyone down most days.

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These are your thorns but they are what you have been able to overcome in one way or another. We all have something to remind us that we are human. No one is exempt from this category. Some have a few and some have many. YOU are NOT alone. Remember – You are part of this STREAM of people that are reading and making up this conversation. We are learning and talking to each one of use about these same things.
You have -Time of reflections, time of thinking, time for studying, time for sleep, time for eating, time for talking and interacting with others who are your support system be it your family, friends that are around your house, neighborhood, or here on the internet. Sometimes it is better to be alone than to be around alot of people and be ignored. Here you have the attention of everyone willing to talk to you about anything you wish to talk about on these very issues that your would like to have better control over.
I have learned over the years how to manage some of these same "diseases" – so that they don't ruin my life – so that I can actually enjoy doing things. However, I have set rules for myself that allow me to manage them and that everyone has to know before I can actually interact with others. Parameters need to be set if you want to have a functional life. That's just is how it works but that's okay. It's like having to use my hearing aids – I need to wear them if I want to hear. If I don't want to hear – then I don't wear them. What are the consequence of both actions? You guess it. I can usually hear okay with them but I can't hear anything without them. So, that becomes the guidelines for what you want to do with your daily life in any actions for the day. Set up a schedule for how you want to live. What do you need to help you feel well? What worked and what didn't? Write these things down in a diary and note them so you not only have a written source to follow but you mentally have a way to release your thoughts in a resourceful way. You will be surprised at what is cooking upstairs and where you can go with managing your days going forward….

COMMENT
@team4travis

I become a Mayo Clinic Champion after hearing Mayo Clinic Social Media Network Director Lee Aase speak at a Rare Disease event. I'm not a patient, but my four-year-old son died of the undiagnosed and rare genetic birth defect Isolated Congenital Asplenia (he was born without a functioning spleen, which left him with a compromised immune system). As President of the newly formed 501(c)(3) T.E.A.M. 4 Travis (Together Ending Asplenia Mortality), I am grateful to be part of an amazing medical organization like the Mayo Clinic. Through membership in their Social Media Network, we hope to bring awareness of this rare disease to many people, seeking others who may be impacted by ICA and furthering medical research through fundraising and advocacy. I look forward to engaging with patients, providers and other non-profit leaders who use the Mayo Clinic Connect and Mayo Clinic Social Media Network.

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Wow – I am so sorry about your little one; and give you praise for your work in bringing attention to this unknown rare disease. My husband and I just moved from WI where there were other rare genetic diseases noted & cared for at Children's' Hospital in Milwaukee over the last 30+ years. As a nurse, I remember the heartaches and difficulties in gaining information, treatments, and answers that weren't always there. It continues to be an area of high emotions, stillness, research and prayers.

COMMENT
@shrinkerbell

I became a Mayo Clinic Champion because I feel that I have been through so much, I like to encourage people and let them know they are not alone and if I can do things then so can they. I think one of my biggest accomplishments has been-after living almost my entire life with obesity, In 2006 I was almost 600lbs and a patient at a care center recovering and was told that I could no longer go on any van or buses for wheelchair transportation. At first I was pretty upset, then I got mad. I decided I was going to show them, so with the approval of my RN, Doctor, and dietician, I started on a low carbohydrate/high protein diet. I lost around 200lbs in 18mo.;however, then I went through some "stuff" and gained 50lbs. So, I basically stayed around the same weight from 2006-2012. In 2012, I had gastric bypass surgery. I lost another 200lbs in the first year. Since I could not walk at this time, my exercise consisted of what I could do in my bed and in my wheelchair. I just had my 7yr surgery anniversary appointment yesterday. Eventhough I have gained about 40lbs, my doctor is extremely happy because I have still lost over 75% of my excess body weight. He is also happy with my blood work and my continual general positive progress. I just like to encourage people that are obese, that they too can do what I have done if they want to. This has not been easy even with gastric bypass. Gastric bypass is NOT the easy way out it is a tool that I can use to lose weight. However, the most important tool through this whole progress has been my head. I have had to figure out why I was eating, and TRY to change that habit. It is NOT easy. This is a day-to-day, meal-to-meal, life of choices. That is why this is NOT a DIET. This is a New life journey is a different direction. I have learned that I am not always going to make the right choices, and "life happens" with things we can't control. I just need to remember that Making a bad food choice does NOT make me a BAD person. I just need to get back "on track" making "good food choices". I do really wish I could reach as many people as I can and just let them know that if I can do this-so can they. I do know, however, that people have to be ready for their own journey, and if they are not ready, nothing I say will make a difference.

Jump to this post

You are amazing to do what you have done. I had a sister that fought obesity all her life. She died at age 50. Due to diabetes and heart problems and numerous other things she dealt with because of her health. I loved her so much. I feel she is in a better place because no one should have lived like she did. She was in the hospital more than she was out. I pray you fight this and continue your journey to a better life.

COMMENT

I found this site when I was already well into remission, and wished I knew about it when I was going through treatments. I would have loved to have had others to talk with about the way I was feeling. I received my initial treatment at Mayo and was then sent to my home state to get treatment. Mayo saved my life, and I was treated so wonderfully, I wanted to share that experience with anyone it might help. When I was going through the treatment, I just put one foot in front of the other and made it through. It wasn’t until later that I realized what I had been through. It is also to talk with people that know exactly what you’ve been through. It’s a great network!

COMMENT
@sutter14

I became a champion to be able to connect with others in similar situations and, perhaps, be able to help even one person through my experiences. I have been diagnosed with so many things (migraines, endometriosis, fibromyalgia, hypothyroid, idiopathic hypersomnia, etc.), I feel alone a lot of the time. I am lucky enough that I have a support system, but I feel like I am letting everyone down most days.

Jump to this post

Thanks for joining us as a Champion @sutter14. I'm hoping the program can provide you with some ideas and opportunities to reach out and help others. It sounds like you have some great experience that others would love to hear about. I'm sure you make more of an impact than you think on others!

COMMENT
@team4travis

I become a Mayo Clinic Champion after hearing Mayo Clinic Social Media Network Director Lee Aase speak at a Rare Disease event. I'm not a patient, but my four-year-old son died of the undiagnosed and rare genetic birth defect Isolated Congenital Asplenia (he was born without a functioning spleen, which left him with a compromised immune system). As President of the newly formed 501(c)(3) T.E.A.M. 4 Travis (Together Ending Asplenia Mortality), I am grateful to be part of an amazing medical organization like the Mayo Clinic. Through membership in their Social Media Network, we hope to bring awareness of this rare disease to many people, seeking others who may be impacted by ICA and furthering medical research through fundraising and advocacy. I look forward to engaging with patients, providers and other non-profit leaders who use the Mayo Clinic Connect and Mayo Clinic Social Media Network.

Jump to this post

Welcome aboard @team4travis. Lee used to be my manager in my old role at Mayo Clinic actually. He's a fantastic speaker and I can see how he could inspire you. Being President of a nonprofit (T.E.A.M. 4 Travis) is an amazing way to tell your story and help others. I'm glad many of the Mayo Clinic resources have helped guide you along. Keep up the great work.

Liked by Allison Bones

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