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!
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Ya verás.Se trata del uso de las cáscaras de las patatas.Es lo que les quedaba después de pelar las patatas para el enemigo.No cuento más,por que leerlo es muy interesante.
Se que la película está en Neflix y ha tenido mucho éxito.Vale la pena dedicar tiempo a esta obra.Una visión " divertida" de momentos trágicos.
En cuanto a recetas ,creo que es un material que se presta a experimentos y siempre exitosos.
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@mecha , thank you for the book suggestion. I am half way through it. I found it at my library and was able to download it to my Kindle. I am thoroughly enjoying the book, thanks to you!:)
I now know about the potato peel pie.
Me alegra que hayas conseguido tener ese libro en tu Kindle.A causa de haber recomendado su lectura,amigos que han visto la película sobre esa obra en Netflix,me han comentado que está bien lograda,así que si aún está en la cartelera trataré de verla.
Gracias por tu agradecimiento.
Mecha
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@mecha! So many thanks to you and your book suggestion. I finished it last night. The Guernsey Potato Peel Pie and Literary Society was as you said...fun but so sad too. The only thing I did not like about it was that it ended far too soon! Some of the letters were heart wrenching to read, and even though this was fiction, you know it was based on real facts from the time. I really appreciate you taking the time to share this interesting book with me. Best wishes to you!
Veo que hay un error en la manera que escribí el nombre del libro. "La sociedad literaria del pastel de piel de patata de Guerney".Recien releeo y me me doy cuenta de esto.
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Do you mean it was "lost in translation" 😂
Me too 🤣 I got it wrong!
Because the true name of the book is:
"The Guernsey Literary And Potato Peel Pie Society"
Ha ha, but no matter it was well worth the read, you were good to recommend to me!
Me alegro que aunque me haya equivocado con el título, la lectura haya sido de tu agrado.
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I love your post and your attitude and the fact that you are comfortable in your own skin (and on your bike). Have a group - any group you choose gives all of us an opportunity to help others at times, vent if necessary and just have someone to "talk" with if one is alone or suffering with few ways to communicate otherwise.
Thank you for your story. It is inspiring.
Potatoe skins? I always leave them on whatever I am preparing. Just used red potatoes sliced with skin on to make scalloped potatoes with ham, sliced leeks and cheeses. It was delicious and nutricous - and full of calories. Oh well.
Thank you so much @olderdiva12345 ! I like what you said. It is true, Mayo Connect offers a place for people to openly share stories with one another. I love how members reach out to members and welcome them into the group, giving them a safe place to "talk" as you say. I think sometimes we may feel alone in our disease process, because maybe those around us don't understand. Then when we find others are out there and they do understand, we don't feel so alone anymore.
And I love the sound of your red scalloped potatoes! Using leeks? Yum! I don't peel my potatoes either...the skin is the best part! @mecha suggested a wonderful book, "The Guernsey Literary and Potato Peel Pie Society" for me to read. It was so good, and I shared it with several of my reading friends. Potatoes are the best vegetable on the planet!