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.
Miss Rosemary, you are a SAINT! Thank YOU for your patience with me doing this interview. If anything that was the challenge of this...working with me! I have a lot of words and I am not afraid to use them! I had no idea that one day I'd have to have open heart surgery, and that the surgery is so precise only a few places perform it, of which Mayo is one. My local cardiologist, who diagnosed me with sub-aortic membrane, was going to refer me to our local heart surgeon for open heart surgery. I may not even be here had I not asked him to send me to Cedar-Sinai and Mayo Clinic for outside opinions. That was probably the biggest take-away for me. I had to be my own advocate and push. So many people don't have access to teaching facilities and they need to be their own advocate. Mayo Clinic Connect was so very helpful in finding out all sorts of things I'd never known. My FP was born at St Mary's in Rochester, and going to see him is second best to being there. He is so smart!
If you traveled down Hwy 101 south past Crescent City then you passed by my other tribe, the Yurok tribe. Both tribes live along the Klamath river. Yuroks are "down river" Indians and Karuks are "up river" Indians. The mouth of the Klamath, where it flows into the ocean, is Yurok tribal headquarters. Happy Camp (yes really) is Karuk tribal headquarters. Its very close to Oregon, but out in the middle of nowhere. Both tribes are Federally recognized and both tribes work hard to remember our native ways, and teach them to the younger ones. I actually bought and brought two Yurok t-shirts as gifts for Dr Bagameri and Dr Dearani, the surgeons. I also consulted with the Karuk tribe before surgery to ask about anything special I needed to do before. They told me to offer tobacco to the Father as a blessing. We grew tobacco. Who knew?
Yes. It took me some time to quit stalking. But I am glad I 'came out' too. The support offered here is so real. So genuine. I am so blessed! Thank you again, Miss Rosemary! Did I mention I love potatoes? 🙂
Thank you @becsbuddy! I don't grow my potatoes. I buy them at the store. Red ones, brown ones, purple ones, gold ones, big ones, little ones...It is an honor to be here. I am so humbled and blessed.
Great spotlight and thanks for sharing a bit more about you. Except for the bike (i have a funny story of the first and last time i drove a bike) I definitely can agree with the beauty of being outdoors, love hiking, camping and all of God's creation. Including potatoes. Growing up in the northeast we were a potato family almost every day.
Looking forward to crossing paths in the Heart issue area. Thanks for Sharing.
I really enjoyed your story, Debra @karukgirl , It is always an inspiration to see someone fully enjoying life despite major health issues. And having that happen due to association with Mayo Clinic is no surprise. Nature is so healing, and though I would rather experience it on foot or horseback, the Harley would certainly cover more territory. Betty is beautiful! Cheers to good health and lots of potatoes!
Thank you @sepdvm ! You are so correct when you say 'nature is so healing', I could not agree more. On foot, horseback, Harley, skateboard or scooter...it is definitely good for the soul to breathe fresh air, feel the sun, and be part of the planet. I am glad you get to enjoy being outdoors too. The Mayo Clinic impacts so many lives and in my case I am so blessed to have it back...we just never know what the future holds, all we have is right now! Potatoes! How can you not like them?
@karukgirl - Debra, We saw highway signs that announced Happy Camp. We traveled south on 101 only as far as Crescent City and spent a couple of nights there while visiting the Redwood groves in the area. Then we headed north on 199 toward Crater Lake National Park.
Had I known you back then, I would have wanted to add a few miles to our route to drive thru Happy Camp!
Fine article. Thanks for introducing us to @karukgirl and yourself.
Thank you @madison1234, I appreciate your kind comments. I was pretty anxious about doing this, but Rosemary is such a kind and wonderful person, she made it easy. Wish I could say I made it easy for her! Ha!
Enamorada de este diálogo epistolar! Y ya soy " admiradora" de alguien amante de las patatas.O papas como se las llama en algunos lugares.Son dúctiles y generosas en la cocina.Siempre hay una receta donde se las puede ubicar para poder paladearlas..
De paso recomiendo la obra maravillosa de Guernsey , "LA SOCIEDAD LITERARIA DEL PASTEL DE PIEL DE PATATAS."Bellísimo libro
Creo que también está en cine.
Auto-translation
In love with this epistolary dialogue! And I am already an "admirer" of someone who loves potatoes. Or potatoes as they are called in some places. They are flexible and generous in the kitchen. There is always a recipe where they can be found to be able to savor them.
By the way, I recommend the wonderful work by Guernsey, "THE LITERARY SOCIETY OF POTATO SKIN PIE."
I think it's also in the movies.
Thank you so much! I am very grateful for the auto-translation, your post is funny and I love the book recommendation. I have never heard of this book, but I did look it up online...huge amount of positive reviews. Now I must read it!
I am glad to hear other people adore potatoes as much as me! They may be just a lowly root vegetable, but I can't imagine being able to make so many fine dishes with any other root vegetables. Seriously. Scalloped rutabaga? Turnip hashbrowns? Parsnip fries? There is no competition! Thanks again for the book suggestion. Are there any potato recipes in the book?