1. < About Connect: Who, What & Why

Sharing the Burden of Pain: Meet @sandytoes14

May 11, 2018 | John, Volunteer Mentor | @johnbishop | Comments (17)

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.

Jen-Mentor

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

@sandytoes14: I enjoy doing research. I also believe in being educated in illnesses and conditions that I have, so I subscribed to Mayo Clinic's newsletter. One day I noticed a blurb about Connect and wanted to find other people like myself who have a desire to give and receive support on their health problems. What I found was a warm, welcoming community where I felt comfortable sharing things that I couldn't share with family and friends who didn't understand what I was going through.

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

@sandytoes14: Connect is a place where I feel safe to share how I feel about my health conditions without being judged.

JOHN: What groups do you participate in?

@sandytoes14: I mostly participate in Chronic Pain and Bones, Joints & Muscles. Sometimes you will catch me in Sleep Health. That’s based upon how much sleep I actually get in a night. The less sleep, the less sense I make!

JOHN: Who has been a special connection for you on Connect?

@sandytoes14: That’s an easy one to answer: my fellow volunteer mentor teammates and moderators. @hopeful33250 always has a kind word, @johnbishop helps at a moment’s notice, @JustinMcClanahan is the one who checks in “just because” and @colleenyoung is much like the beautiful little hummingbirds I love to watch at my feeders. She is everywhere at once bringing joy and knowledge.

I also am very involved with those who have fibromyalgia on Connect, and I enjoy sharing ideas with other members about distracting oneself from chronic pain.

JOHN: What surprised you the most about Connect?

@sandytoes14: The Connect community itself surprised me: the members reaching out to find out about their own health concerns and sharing what they have learned with others, and the support and strength they give each other to be better advocates for themselves.

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

@sandytoes14: Phone calls from my kids make me feel refocused. There is something about unexpected video chats from my daughter in Germany and a quick “I love you Mom —  I’m on my lunch break” call from my son that get to me.

JOHN: Tell us about your favorite pastime or activity.

@sandytoes14: Sitting near the ocean, with my husband, listening to the laugh of the gulls as the waves lap up on the shoreline is a favorite. I generally have a light-read book in my bag and my perpetual cup of coffee — Dunkin Donuts’ is preferred — in my hand.

JOHN: What food can you simply not resist?

@sandytoes14: Chocolate

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

@sandytoes14: Sandra Bullock: Beauty and Brains

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

@sandytoes14: Pearl Harbor, Hawaii. My husband and I lived on Ford Island for nearly five years for his last assignment in the U.S. Navy. Every day was like a vacation.

JOHN: Puppies or kittens?

@sandytoes14: Puppies

See more Member Spotlights.

13 Reactions

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

jshdma | @jshdma | May 14, 2018
In reply to @jshdma "In my experience, once you are involved in ongoing medical problems (even not life-threatening ones) you..." + (show)
@jshdma

In my experience, once you are involved in ongoing medical problems (even not life-threatening ones) you are never the same, and a permanent darkness comes over you.

Jump to this post

Thanks for your thoughts. You seem to have a lot of inner strength.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 14, 2018
In reply to @jshdma "In my experience, once you are involved in ongoing medical problems (even not life-threatening ones) you..." + (show)
@jshdma

In my experience, once you are involved in ongoing medical problems (even not life-threatening ones) you are never the same, and a permanent darkness comes over you.

Jump to this post

@jshdma

I suppose for many of us, we have come to realize the inner strength is not something that comes naturally, it must be acquired. It comes with determination not to give in to a negative mind set.

Teresa

REPLY
azsandy | @azsandy | May 16, 2018

Hello; this is my first connection to this site.......Have belonged, but not participated until now. The topic of pain caught my eye. My pain is in the form of depression which has a cycle of every other day "good" and "bad." I've tried a number of approaches to finding relief. Currently I'm in a series of neurofeedback "brain training" which has been slow to help.....not sure how it will turn out. Do try to get in daily fast walks and have recently tried Yoga.....These seem to be making some difference. Not sure this was the place to send all of this ? Oh, your comments about your husbands last duty station made me smile. My Army husband's last station was The Presidio in SF ~ I called them our "Camelot" days :-)))) I look forward to reading more of your posts; thanks for sharing....

REPLY
4 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 17, 2018
In reply to @azsandy "Hello; this is my first connection to this site.......Have belonged, but not participated until now. The..." + (show)
@azsandy

Hello; this is my first connection to this site.......Have belonged, but not participated until now. The topic of pain caught my eye. My pain is in the form of depression which has a cycle of every other day "good" and "bad." I've tried a number of approaches to finding relief. Currently I'm in a series of neurofeedback "brain training" which has been slow to help.....not sure how it will turn out. Do try to get in daily fast walks and have recently tried Yoga.....These seem to be making some difference. Not sure this was the place to send all of this ? Oh, your comments about your husbands last duty station made me smile. My Army husband's last station was The Presidio in SF ~ I called them our "Camelot" days :-)))) I look forward to reading more of your posts; thanks for sharing....

Jump to this post

Hello @azsandy

I am so glad that you posted on Mayo Connect. Welcome! Yes, pain can take many forms, can't it? Pain can be physical, mental, emotional and spiritual. Often, the emotional pain of depression can also lead to physical forms of pain as well. I would encourage you to look at some of our Members' post in the Mental Health discussion group. We hav a discussion group on long term depression, https://connect.mayoclinic.org/discussion/long-term-depression-1/. Also, https://connect.mayoclinic.org/discussion/doing-things-to-relieve-depression-motivation-and-ideas/ As you read these posts you will undoubtedly identify some thoughts that are similar to yours.

I see that you are currently working with "neurofeedback brain training." Could you tell us something about that?

If you are comfortable sharing more, please do so in one of these groups. Have you been diagnosed with a certain type of depression? Have you tried any medications?

I look forward to hearing from you again.

Teresa

REPLY
Jen, Alumna Mentor | @sandytoes14 | May 18, 2018
In reply to @azsandy "Hello; this is my first connection to this site.......Have belonged, but not participated until now. The..." + (show)
@azsandy

Hello; this is my first connection to this site.......Have belonged, but not participated until now. The topic of pain caught my eye. My pain is in the form of depression which has a cycle of every other day "good" and "bad." I've tried a number of approaches to finding relief. Currently I'm in a series of neurofeedback "brain training" which has been slow to help.....not sure how it will turn out. Do try to get in daily fast walks and have recently tried Yoga.....These seem to be making some difference. Not sure this was the place to send all of this ? Oh, your comments about your husbands last duty station made me smile. My Army husband's last station was The Presidio in SF ~ I called them our "Camelot" days :-)))) I look forward to reading more of your posts; thanks for sharing....

Jump to this post

@azsandy I am so very happy you decided to join us here on Connect. Please continue to share with us. I was unavailable to answer you right away and asked my teammate Teresa also known as hopeful33250, to initially welcome and guide you.

You stated that walking and yoga help you. Azsandy, does excercise help your mood and your pain?

Military duty stations-- there is such a love/hate relationship! I'm glad I could make you smile. I look forward to getting to know you

Jen

REPLY
azsandy | @azsandy | Jun 5, 2018
In reply to @azsandy "Hello; this is my first connection to this site.......Have belonged, but not participated until now. The..." + (show)
@azsandy

Hello; this is my first connection to this site.......Have belonged, but not participated until now. The topic of pain caught my eye. My pain is in the form of depression which has a cycle of every other day "good" and "bad." I've tried a number of approaches to finding relief. Currently I'm in a series of neurofeedback "brain training" which has been slow to help.....not sure how it will turn out. Do try to get in daily fast walks and have recently tried Yoga.....These seem to be making some difference. Not sure this was the place to send all of this ? Oh, your comments about your husbands last duty station made me smile. My Army husband's last station was The Presidio in SF ~ I called them our "Camelot" days :-)))) I look forward to reading more of your posts; thanks for sharing....

Jump to this post

Hello, so sorry I've been so long in getting back to you. I'm not a big user of social media, or the internet.....Have avoided technology for a long time and do regret not getting on board a long time ago! I did want to respond to your inquiries about the neurofeedback that I mentioned in my initial post. I had a session today which involves being hooked up to little electrodes, attached to the head. Then viewing a computer screen at two different times, concentrating and waiting for feedback on how my concentration is doing. It is hard to explain in a concise way, but I'm beginning to sense a "shift"----- my "bad" days aren't as bad, and I do seem to have better endurance on both good and bad days. My cycles of good and bad days had been a very predictable every other day rotation. I would look ahead to see if I wanted to plan something for a good day. Then sometimes I'd have two bad days in a row and I'd be thrown off ....Now I'm having days that seem to be good or a combo of good and bad, not the severe bad days I once had every other day.

The recommendations to get daily , 40 minute aerobic exercise ( I walk fast at a nearby park ) and to try Yoga, I think are helping....The technician said the same thing today.......that what I'm doing, all together, makes the neurofeedback more productive. I also work hard at eating healthy, even when I don't feel like eating at all.

I will try hard to respond sooner in the future. We just had family visit for a week, and the weeks before that I was getting ready for the big visit. Thanks for the warm welcome !

REPLY
azsandy | @azsandy | Jun 5, 2018
In reply to @azsandy "Hello; this is my first connection to this site.......Have belonged, but not participated until now. The..." + (show)
@azsandy

Hello; this is my first connection to this site.......Have belonged, but not participated until now. The topic of pain caught my eye. My pain is in the form of depression which has a cycle of every other day "good" and "bad." I've tried a number of approaches to finding relief. Currently I'm in a series of neurofeedback "brain training" which has been slow to help.....not sure how it will turn out. Do try to get in daily fast walks and have recently tried Yoga.....These seem to be making some difference. Not sure this was the place to send all of this ? Oh, your comments about your husbands last duty station made me smile. My Army husband's last station was The Presidio in SF ~ I called them our "Camelot" days :-)))) I look forward to reading more of your posts; thanks for sharing....

Jump to this post

Hi and thanks for your welcome......I just responded to "sandytoes" and touched on some of your questions. I'm not very adept on the computer, and hope it's not too much trouble for you to find what I wrote......I look forward to being in touch !

REPLY
View MoreView Less
Please sign in or register to post a reply.