ROSEMARY: What brought you to Mayo Clinic Connect?
@karukgirl: I learned about Mayo Clinic Connect when I first visited Mayo Clinic in Rochester. I was sent a patient packet before my visit which included a pamphlet about Connect. I signed up after my visit because a friendly person in the Gonda Building suggested I join. I “stalked” the community (read the discussions) for months before feeling brave enough to post my first question.
I have worked in health care for over 40 years, and have never seen an organization like Mayo Clinic. They truly are the finest in the world. And to stay connected through Mayo Clinic Connect is a good feeling. Similar to the Tony Bennett song, "I left (part of) my heart in Minnesota" and I appreciate being able to still be part of this.
ROSEMARY: What about Connect makes you feel comfortable to share and to be open with the community?
@karukgirl: While I was still a stalker, I could not help but notice how warm and inviting every person was when they responded to other members in the support groups — members answering other members with really good information and sharing experiences openly with each other. That warm and inviting feeling is what gave me confidence to post my first question. The knowledge of the mentors and their willingness to reach out to me was so touching.
You never know who may be silently reading your post and how it may help them.
ROSEMARY: What groups do you participate in?
@karukgirl: I participate in the Hypertrophic Cardiomyopathy (HCM) Support Group. Being diagnosed later in life was such a surprise. Finding others just like me kept me coming back for more, both to get and to offer support.
I am taking my time getting used to things on Connect and will eventually start taking a poke around some other support groups I have shared interests in. For instance, I recently lost the vision in my left eye due to NAION (non-arteritic anterior ischemic optic neuropathy). I want to wander around, half blind, in the Eye Conditions Support Group someday.
ROSEMARY: Tell us about a meaningful moment on Connect.
@karukgirl: When I got my first response. I was so touched by the member who cared enough to take the time to answer my questions and offer me advice. She truly made an impact on me. I was all warm and fuzzy for days.
ROSEMARY: What surprised you the most about Mayo Clinic Connect?
@karukgirl: I think I was most surprised about how caring and inviting the community is on Connect. It was such a comfort to virtually meet other people like me. When you don't live in a big town, the odds of finding another person with your same diagnosis are practically nil. And trying to share with others who don't have your condition was like trying to describe the color red to someone who can’t see. They just don't get it. They can't. On Connect, people with rare or unusual or complex, serious conditions come together under one roof, so to speak. The community builds and soon you don't feel so alone.
ROSEMARY: What energizes you, or how do you find balance in your life?
@karukgirl: I am energized when outdoors. I love hiking. You can see God's creation in all its glory. I find my balance in prayer. I am so blessed and grateful for the life I have. It may not have turned out the way I wanted, but I know He knows better than me what is better for me!
I also get really excited about painting. Not in the style of Vincent Van Gogh or Rembrandt, but that of Sherwin-Williams or Benjamin-Moore. I call myself an "inferior decorator" and have painted walls, furniture and anything that isn't tied down. The magic of paint never gets old to me.
ROSEMARY: Tell us about your favorite pastime or activity.
@karukgirl: I'm all over the place on the fun meter. I love hiking and riding "Betty" my Harley motorcycle, though I haven't ridden since my diagnosis. I enjoy being able to walk our river trail every day. I love ballroom and swing dancing, and target practice and blasting through a box of ammo. In the summer I enjoy camping with my guy and smelling like a campfire all weekend. In the winter I enjoy snowshoeing.
I love entertaining, cooking and baking. I have no fear in the kitchen and have had some experiments that made the smoke detector go off. I won't elaborate here, but some smells last for days!
Before I had my open-heart surgery, I had lost the ability to do most everything I love, and it was extremely depressing. Being able to do them again, maybe not like before, is a blessing. I am two years out from surgery and feel so much better. I don't dread trying to walk anymore. I look forward to it!
ROSEMARY: What food can you simply not resist?
@karukgirl: Oh, that's easy. Potatoes! You can boil them, mash them, hash them, scallop them, roast them, chip them, tot them, French fry them, bake them, country fry them, au gratin them. You can make potato soup, potato pancakes, potato salad and gnocchi. They are adaptable to every meal. Breakfast? Hash browns. Lunch? Fries, of course. Dinner? See list above. I adore potatoes. Because carbs sadly became "evil," I don't eat them much...but when I do? Oh. So. Good. Yum. Smack.
ROSEMARY: What do you love about where you live or vacation?
@karukgirl: I love that I live in America, the land of the free and home of the brave. Specifically I love living in Northern California, close to the Karuk tribe and my native roots. We have mountains, trails, lakes, streams, hiking, fishing and skiing. We are close to the Oregon border (hello tax free shopping), not far from the ocean, and there is a major airport 2.5 hours away. Even though we have lost a lot due to massive wildfires, it's still a beautiful place. But during the summer, the earth rotates in such a way that we end up being approximately six miles from the sun. It gets HOT here in the summer. It can stay 110 degrees for days and days and days. Keeps the weak away!
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.
Right?
For the community St Patty’s party, we made baby potatoes stuffed with corned beef, cheese & sour cream. You now have me thinking about what I can do with potatoes for the Cinco de Mayo and Kentucky Derby events this weekend!
Oh yum! Those baby spuds sound good. Come back and share what you decided for your Cinco de Mayo Clinic Connect potatoes 🙂
@dbeshears1 ! I was out washing my car and you just gave me an idea. It's brilliant! It's maybe not brilliant, maybe just a good one. Well, maybe it's just ok. Actually it's probably a dumb idea after further contemplation... but maybe wouldn't it be a marginally cool idea to have members who want to, submit their favorite recipes. Recipes from all the the country and the world and we, well not we, but somebody who knows how, had it made into a cookbook. Mayo Clinic Connect Cooks, or Connect with Food or something else more clever. Then we sell the cookbooks and the proceeds go to Mayo Clinic for research. All because of your stuffed baby potatoes with corned beef, cheese and sour cream...it was just a thought. Food brings people together like Connect does. I better go back to washing my car 🙂
@karukgirl,
So good to get to know you, Debra! You've carved out a really enjoyable life since your surgery. I just love the picture of you and Betty!
I'm glad that you found Mayo Connect.
I do think the idea is brilliant! However, I doubt Mayo would want their name associated with too many of our potato recipes, unless they’re looking for new patients lol! But we could pick out healthy ones? On the other hand, when I was a throat cancer patient and being begged to swallow food and not lose weight, I could have used fattening, soft potato recipes!!
Debra, I can't help but wonder who that friendly person was who introduced you to Mayo Connect! I would like to thank them.
It is great to learn that you found support by reading and participating in the Hypertrophic Cardiomyopathy (HCM) Support Group. Receiving and giving support is what Connect is all about. I think that I am not alone in saying that I'm glad you progressed from "stalker" to participant by joining Connect.
Last September, my husband and I traveled to Crescent City on the Pacific Coast in Northern California to see the Redwoods. Was I anywhere near the home of the Karuk tribe and your native roots? It is an absolutely beautiful area.
I also want to thank you for accepting the challenge of being interviewed for this spotlight. I really enjoy doing the interviews and getting to know more about the patients beyond their medical issues. By the way, I made sweet potatoes for dinner!
@karukgirl
What an exciting life you have! Wonderful that the surgery gave you your life back.
Your love of potatoes make me think that you have some Swedish blood! Haha!
I was born in Sweden and we definitely are potato people.
The best potatoes are ready by Midsummer. Yummy!
We have one special potato dish: Janssom’s Temptation. Pretty similar to scalloped potatoes but with Swedish style anchovies.
Do you have bears in your area? Thinking of your hiking and camping.
I have lived in SC since 2005. Our wild animals to watch out for are alligators. There are many of them in our lagoons and ponds. No swimming there- we have beautiful beaches- where we keep an eye out for sharks…
Wonderful to “meet” you, Debra! Now. As to all those potatoes you love, do you grow them or just hallucinate! When i was growing up, we only ate rice, so I’ve been learning about potatoes ever since. Glad to have you on board! Becky
@astaingegerdm! Thank you for your comments! Are you some kind of psychic?? I am half Swedish! I only know because of Ancestry.com as I was adopted at birth. How funny! I had no idea where the strong potato love came from. This explains many things.
Yes ma'am. We have bears here. They even like to come into town now and again since our massive wild fires took their territory away. I'll take the bears (and wolves and coyotes) over the alligators any day. Yikes!
Thanks for sharing the potato connection. I'll look up your Janssom's Temptation on Pinterest. Sounds interesting. Except for the anchovies part 🙂