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: What brought you to Mayo Clinic Connect?
@rwinney: After two years of declining health, troubleshooting and receiving a variety of diagnoses, I finally landed on small-fiber polyneuropathy in February of 2019. This disease was unknown to me, my family and friends. I had been struggling to connect with anyone who had knowledge or understanding of my pain and could relate to what I was experiencing.
In May of 2019 I found Mayo Clinic Connect as I scoured the internet for neuropathy support groups. I immediately gravitated to Mayo Clinic as I had applied to be seen there earlier in the year but was unfortunately denied. Mayo Clinic had been touted as the best of the best by two people I knew who had been seen there. I tested out other medical patient forums but none held a candle to Mayo Clinic Connect. I found it easy to navigate, clear to read, and very welcoming.
TERESA: What motivates you to take part in the community?
@rwinney: My motivation to take part in the Mayo Connect community stems from my desire to go beyond the textbooks, doctors, and internet to learn about my multiple conditions.
I value human experience and opinion. The information I obtained from others sharing on Connect has helped me better understand my body, learn new possibilities for pain relief such as supplements, medications, treatments, therapies, etc. I've learned tricks of the trade from those who have walked my path. Beyond the medical aspect, I immediately felt welcomed by mentors, moderators, and community members. A strong sense of compassion, empathy and support was displayed.
As I engaged, it became clear to me that Mayo Connect was the community I had been missing. It filled many voids from my loss of job, being alone all day and lonely, to providing human connection and support from those who "get it." Connect is there when I wake up in the morning providing me purpose and a structure to my day. Also, it is there in the middle of the night when I'm awake from pain, can’t sleep and need to reach out. I know that helping others is bigger than myself but, receiving help is equally important at times.
TERESA: What about Connect makes you feel comfortable to share and to be open with the community?
@rwinney: It took me time to feel comfortable sharing on Mayo Connect. When I first came, I sat back and observed for a while. I did some research by reading posts of other members and navigating around different discussions and topics. I liked the fact that there were moderators on the site and on occasion I would see them step up and remind members of the community’s guidelines. This made me feel comfortable. I knew that this wasn't a free-for-all site, but one that was supervised and held accountable.
In due time I realized that others were deeply sharing their experiences, trials and tribulations, and I eventually felt a kinship with these folks and felt comfortable sharing my own experiences. You become to feel like you are connected by sharing common experience. After you feel that connection then realize you can help others, it comes full circle.
TERESA: What groups do you participate in?
At first, I focused on the Neuropathy group. Then I began to explore other groups like:
TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.
@rwinney: Wow, I've had a good number of meaningful moments. There was a time that I struggled mentally with taking opiates and medical marijuana for pain. @artscaping was there with her unique approach and talked me through it on my worst days. She helped by offering her knowledge of medical marijuana and its use. She presented strength and encouragement when I needed it most and introduced me to myofascial release therapy.
@johnbishop never ceases to amaze with his never ending research endeavors which help so many members – priceless.
I've been able to pay it forward by offering my knowledge and experience to others. As one of the younger members, I tend to gravitate towards the members who are raising children still and have been presented with the scary uncertainty of neuropathy or migraine. I deeply relate and want nothing more than to bring compassion, care and reassurance to them.
Sharing my tips, past treatments and medications may help get someone on the right path. I've been able to build a wonderful friendship with a young lady who related and connected with me through the neuropathy group. She and I both feel lucky to have crossed paths.
I've also been able to share my cornea transplant and cataract experiences to help others. I had an early advantage by having the unique experience of having both surgeries at age 43. In addition, my neurologist is a bit of a trailblazer when it comes to migraine treatments. I have been able to recommend certain migraine medications and treatments for others to speak to their neurologist about.
Helping others on Connect has been a great way for me to turn my negatives into positives!
TERESA: What surprised you the most about Mayo Clinic Connect?
@rwinney: The level of sincerity.
TERESA: What energizes you, or how do you find balance in your life?
@rwinney: My children definitely energize me! My son is 27 and getting married next year – one year later than planned thanks to COVID, and has a beautiful new home. There is talk of future babies!!! My fingers are crossed.
My daughter is 19 and attending an incredible college. She is flourishing as she discovers herself and her future path of psychology, education and working with disabled children. She is also actively involved with undoing racism and promoting inclusion.
I'm beyond proud of my children and it seems my pain dulls most when I'm with them. They bring me distraction, undeniable joy and motivation.
TERESA: Tell us about your favorite pastime or activity.
@rwinney: I love interior and exterior design. I take pride in my home by refreshing the decor and being attentive to my landscaping. I enjoy summer to its fullest and absolutely love planting and watching my flowers and trees grow. Granted my abilities have become limited but, "Where there's a Winney, there's a way." LOL! This is our family motto. I may need help doing something, or may not be able to do it at all, but somehow, some way, it happens! This is where I must give props to my wonderful family for supporting me.
TERESA: Do you have a favorite quote, life motto or personal mantra?
@rwinney: The aforementioned family motto of course. "Where there's a Winney, there's a way."
TERESA: What food can you simply not resist?
@rwinney: I have a soft spot for bread.
TERESA: If Hollywood made a movie about your life, who would you like to see cast as you?
@rwinney: Well, considering a teenager once told my daughter that I looked like Dolly Parton (hair wise I suppose) I'll go with Dolly! She's a beautiful, kind soul. Unfortunately, I can't sing a lick so her talent would be wasted.
My backup could be a young, vibrant Farrah Fawcett. Oh how my husband would love that!
TERESA: What do you love about where you live or vacation?
@rwinney: I haven't had the ability to vacation in the past 3 years, however, I love Ocean City, Maryland. We created family memories to last a lifetime there and it holds a special place in my heart. I do hope to re-explore Ocean City one day even though my children are grown. Perhaps with grandbabies! My capacity will have changed in going but, I'll still make the most with what I have.
TERESA: Puppies or kittens?
@rwinney: Puppies all day.