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Fri, Sep 27 9:00am

Surprised to Connect with So Many with My Rare Disease: Meet @astaingegerdm

By Rosemary, Volunteer Mentor, @rosemarya

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.

2019.9.24 @astaingegerdm Member spotlight

ROSEMARY: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?

@astaingederdm: Being a Mayo Clinic patient for eight years, I get periodic news updates from Mayo. In one, Mayo Clinic Connect was mentioned. I looked through the different groups and was surprised to see a discussion on median arcuate ligament syndrome (MALS) in the Digestive Health group. This is a rare condition, and I had been treated for it, not knowing there were so many others living with it. 

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

@astaingederdm: The members of the MALS group have the same or similar conditions, and they have encountered different difficulties. We can share our experiences, and in doing so, help each other. I am a problem solver and like sharing my thoughts with the community.

ROSEMARY: What groups do you participate in?

@astaingederdm: I primarily participate in the Digestive Health group, but also take part in conversations in the About Kids & Teens, Autoimmune Diseases and Chronic Pain groups. 

ROSEMARY: Tell us about a meaningful moment on Connect. 

@astaingederdm: There have been many meaningful moments on Connect when I’ve exchanged experiences and advice with other Connect members in different groups. I am grateful when someone likes my post as well as when someone asks me to elaborate on recommendations I posted.

I was surprised and flattered when I got the offer to become a mentor. This is actually something I had envisioned to be part of my retirement. I have a past in pediatrics, where I spent a lot of time educating and talking to parents and children. I never wanted to force my opinion on someone else, but merely share my knowledge as guidance.

ROSEMARY: What surprised you the most about Connect?

@astaingegerdm: So many members have been through so much while trying to get an accurate diagnosis and treatment, and they are learning to advocate for themselves. I am happy to learn from them.

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

@astaingederdm: To be honest, I don’t have much energy these days. My illnesses and treatments have drained a lot of energy, even now when I have been “cured” for three years. However, my adult children don’t allow me to sit back feeling old! Two of them live with us, and the oldest one lives in Sweden and has two young children. When they were growing up, I was always a part of their daily life. I still am through sharing many of their activities, including frequent calls across the ocean. 

ROSEMARY: Tell us about your favorite pastime or activity.

@astaingederdm: I love playing tennis. I took it up later in life. Now, it’s social tennis, and I get to meet other women, most of us retired. I find it very invigorating. I have played in the United States Tennis Association (USTA), also, and might do so again. Other important parts of my life are my dogs! I have a Bernese mountain dog and a Dachshund, both attached to me like Velcro.

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

@astaingederdm: “Everything will work out.” 

That way of thinking has helped me through my life, and I teach my children to do the same.

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

@astaingederdm: We now live in vacation paradise! After living in New York and struggling through those winters, we moved to Hilton Head Island, South Carolina. We started coming here on vacation when my son was a newborn, 32 years ago, and we decided to move here after retirement. We like to be able to get to the beach in a few minutes. Nature here is beautiful. Maybe I could do without the alligators that sunbathe on our lawn, though!

ROSEMARY: Puppies or kittens?

@astaingederdm: Definitely dogs! We have two and our daughter has one. They are elderly. My current Bernese mountain dog did not leave my side the years when I suffered the most with my illness. He would check my vital signs: breathing, body temperature and movement. After I finally finished all my treatments, he somehow sensed that I was well again.       

See more Member Spotlights.         

 

Wellcome, @astaingegerdm. So nice to get to know you, Our focuses are pretty much different, so although I have “seen” you around a little bit, I really did not feel that I knew you. You mention a background in pediatrics, were you a nurse or a doctor?

You mention not having energy, but if you play tennis you have more than many of us.

Initially I thought, “hmm, Hilton Head may be nice” but with the mention of alligators 🐊 I changed my mind! This from a person who lives in a neighborhood in NH where black bears are spotted almost daily, a somewhat recent development.

I like your motto, something we should all remember at times. Yes, many of us have had trouble getting a real diagnosis. I guess that’s why medicine is called a “practice”. If I had gone much longer there’s a good chance I would not be here.
JK

COMMENT

Thank you for letting us get to know you a little better @astaingegerdm. I enjoyed reading your spotlight. I have used your quote many times through the years and it has helped me get through some difficult times. John

COMMENT

Thank you JK! I practiced pediatrics for 30 years in NY. I had a wonderful career until I “hit the wall” – this coincided with plans for retirement and moving south. To clarify my low energy and playing tennis -there were a few years when I was too fatigued from the illness to play. I play a couple of days a week, often mentally tired, brain fog. My body has sufficient stamina though.

COMMENT
@johnbishop

Thank you for letting us get to know you a little better @astaingegerdm. I enjoyed reading your spotlight. I have used your quote many times through the years and it has helped me get through some difficult times. John

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Thank you John!

COMMENT

Welcome, welcome. We certainly need you. I look forward to getting to know you better. I kind of hang out with the bones, joints and muscle crowd on Connect with a few visits to neuropathy and chronic pain. And final question, did you escape the recent hurricanes? I lived on the east coast for 15 years and spent summers at Fenwick Island. Some real doozies came through and were a bit frightening. Thanks for all of the info on Spotlight. That's a start. Be safe and protected. Chris

COMMENT

@astaingegerdm– Good morning! It is so nice to meet you. I am a mentor in the Lung Cancer and Lung health groups. I also travel around to others from time to time. I had to look up your illness on google, as I had never heard of it before. You've been through quite a bit with this. Recovery can take a lot of time and can be very exhausting. I'm glad that you are recovering and able to do more of what you love!

COMMENT
@artscaping

Welcome, welcome. We certainly need you. I look forward to getting to know you better. I kind of hang out with the bones, joints and muscle crowd on Connect with a few visits to neuropathy and chronic pain. And final question, did you escape the recent hurricanes? I lived on the east coast for 15 years and spent summers at Fenwick Island. Some real doozies came through and were a bit frightening. Thanks for all of the info on Spotlight. That's a start. Be safe and protected. Chris

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Hi Chris, Thanks for the welcome! Unfortunately, I won’t be able to come to the meet- up. Really sorry- this is such a nice group of people.
We escaped the brunt of Hurricane Dorian. The season is not over yet..
Our island was hit hard 3 years ago. The heat is getting to me – almost October and still like a humid sauna. Be well!

COMMENT

Welcome, @astaingegerdm ! We’re happy to have you join us! I could sure use some of your energy right now. 🥴. You live in paradise, so of course your kids live with you! I live in Colorado and it got cold yesterday. Oh, well.

COMMENT
@merpreb

@astaingegerdm– Good morning! It is so nice to meet you. I am a mentor in the Lung Cancer and Lung health groups. I also travel around to others from time to time. I had to look up your illness on google, as I had never heard of it before. You've been through quite a bit with this. Recovery can take a lot of time and can be very exhausting. I'm glad that you are recovering and able to do more of what you love!

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@merpreb , Thank you!
Lung cancer and pulmonary diseases are tough illnesses to cope with. My mother- in law had lung cancer and I helped caring for her- many years ago. Now I’m watching a woman younger than me wait for a lung transplant- an inherited disease. She plays tennis with oxygen tube in a back pack. She changes them every 20-30 minutes. Amazing how everyone deals with a dismal diagnosis.

COMMENT

@becsbuddy – Thank you! About living in paradise- we could use some cooler weather here. Summers are always hot here, but until 3-4 years ago it was not for so long and with such extreme conditions as now. Global warming?

COMMENT
@astaingegerdm

@merpreb , Thank you!
Lung cancer and pulmonary diseases are tough illnesses to cope with. My mother- in law had lung cancer and I helped caring for her- many years ago. Now I’m watching a woman younger than me wait for a lung transplant- an inherited disease. She plays tennis with oxygen tube in a back pack. She changes them every 20-30 minutes. Amazing how everyone deals with a dismal diagnosis.

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@astaingegerdm– Wow and she plays tennis? lol, that is so terrific. Good for her. Any chance that you can get her to join Connect? I'd love for her to tell her story, it's so informational! There are 2 groups that she could join, one being the transplant group and the other is lung health! Tell her for me that she is my hero! Will you?

COMMENT

I so appreciate the opportunity to get to know you, @astaingegerdm. Coincidentally, I came to Connect with a rare form of cancer, neuroendocrine tumors, NETs, and was equally surprised to find others with the same condition. It is hard not to feel alone when you don't know anyone else who has experienced the disorder that you have.

I'm sure that your medical experience and your personal health journey will make you a wonderful mentor! I'm so glad that you are part of the mentor team.

Thank you, @rosemarya, for providing us with this opportunity to get to know @astaingegerdm a bit better!

COMMENT
@hopeful33250

I so appreciate the opportunity to get to know you, @astaingegerdm. Coincidentally, I came to Connect with a rare form of cancer, neuroendocrine tumors, NETs, and was equally surprised to find others with the same condition. It is hard not to feel alone when you don't know anyone else who has experienced the disorder that you have.

I'm sure that your medical experience and your personal health journey will make you a wonderful mentor! I'm so glad that you are part of the mentor team.

Thank you, @rosemarya, for providing us with this opportunity to get to know @astaingegerdm a bit better!

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@hopeful33250 – it is so nice to hear from this wonderful group! There is so much experience of difficult health issues among us all.
I Peds we don’t see much of NET- except when to suspect one. I got more knowledge than I ever wanted when my daughter was diagnosed with Cushing’s at 26. I have followed the Cushing’s support group too.
I hope you are feeling well!

COMMENT
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