Empowering patients to advocate for themselves: meet @kariulrich
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: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?
@kariulrich: I had the honor to be given a patient scholarship to the Mayo Clinic Social Media Network Annual Conference when Mayo Clinic Connect was first introduced. I was excited that there was a place I could go to find others with my rare disease. Empowering other patients to advocate for themselves is what motivates me to take part in the community.
JEN: What about Connect makes you feel comfortable to share and to be open with the community?
@kariulrich: I find Mayo Clinic Connect to be different from other online support groups in which I have been involved. With Connect, I have confidence that my information and data is being used appropriately. Mayo Clinic Connect adheres to high ethical standards, in addition to its policies and guidelines being transparent, which is essential to me.
JEN: What groups do you participate in?
@kariulrich: You will find me mainly in Digestive Health as a volunteer mentor for patients dealing with median arcuate ligament syndrome (MALS) and occasionally on Heart & Blood Health, advocating for those with a rare vascular disease, fibromuscular dysplasia. The conditions I participate in are rare and underdiagnosed, so when patients find us, there is a sense of relief and validation.
JEN: Who has been a special connection for you on Connect?
@kariulrich: This is a difficult question to answer, as each patient with whom I interact with inspires me. One person who stands out is @jmmb. She has been a support for me with my condition, as well as a support for others. @jmmb and I had a discussion about how difficult it is to find a physician that understands the unique problems MALS patients face and how devastating it is when you leave appointment after appointment in tears due to lack of awareness and knowledge. We have a rare disease; furthermore, it is rare to find a provider who is willing to listen and learn. When you do find a provider who is patient-centered, it is indeed a gift. @jmmb’s words inspired a piece written for the Mayo Clinic Social Media Network blog Experts by Experience, “Grieving the Loss of Your Physician.”
JEN: What surprised you the most about Connect?
@kariulrich: The ability to connect with others who have my rare disease surprised me. I also am in awe of the resiliency of patients. I know I can go to my Connect family when I am scared, happy or sad, and someone will be there to encourage me through a painful moment or celebrate a success. Connecting with others who have shared experiences is different from friends and family, because there is more in-depth understanding and sense of empathy in their responses.
JEN: What energizes you, or how do you find balance in your life?
@kariulrich: Some days are more difficult than others to find balance. Oftentimes, I have to remind myself that it is essential to spend time doing things I enjoy. I love spending time with my family, from following professional motocross, to fishing with my youngest son and father, to identifying stars and planets in the night sky with my oldest son. My husband and I have rescued several furry pets with special needs, as well as a few exotic animals. This is where some of my nursing skills come in handy!
JEN: Tell us about your favorite pastime or activity.
@kariulrich: I have so many activities I enjoy, such as painting, being involved in our community by serving on the board of trustees for the Naeve Health Care Foundation, downhill skiing, and my newest passion: learning to ride horses, Western pleasure style. I believe it is essential to continue to pursue passions in life to the fullest.
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@kariulrich you are a shining example of what Connect is all about. I really enjoyed reading your spotlight and learning a little more about you. Happy Friday to you and all of our Connect members!
Very nice @kariulrich Really enjoyed this spotlight and getting to e-know you better! Cheers and keep on pursuing those passions! Cheers!
What a great spotlight article! You shine through with your words as much as you do in person! I'm so pleased to know you.
Great spotlight Jen! Thanks for sharing and we're so glad you're here 🙂
@kariulrich You are awesome!! I am so happy I have inspired you. You most certainly have inspired me and so many others. To know I may have touched you in any little positive way of this 'journey' is so incredible to me, when I look up to you and your guidance and bravery through all this. I thank you so much, it means the world to me to know that I could have helped you, even if a little. Or anyone for that matter. Like you say, it is so comforting just to know we are not alone, and we can help each other. You are truly an inspiration!!
Yes, great spotlight and a reminder to keep living in spite of the diagnosis.
Here we have two people praising each other because they are inspiring each other. Without Connect this could not have happened.
Kari, How wonderful that you have discovered a connection with horses. They are sensitive intelligent animals and bond closely with humans. I have a horse that my sister rescued several years ago and he has helped me with my recovery from spine surgery (at Mayo) because riding with good posture builds core strength. Last year, I could barely lift the saddle enough to get it on his back, and this year, I am doing that with a lot less difficulty. Horses evolved on the plains as prey and herd animals, so they don't like to be away from other horses, and when spooked they will run first and ask questions later. You feel the tension build in them as their muscles bunch before they bolt. You have the choice to dismount and lead a horse past what it fears. Horses are very healing. There are lots of training clinics you can attend as a spectator to learn about training and communication with horses. Always ride balanced because you never know if they will trip or if something will scare them. Never wrap lead ropes around your hands because a horse can take off at any moment and you can loose fingers. Always end on a positive note when riding. Essentially everything you do with a horse is training and communication, and you don't want to reinforce any unsafe behavior. Your control of an animal that outweighs you and is much stronger than you comes from the mutual respect you have for each other. When I'm out on the trail, I ask my horse to stop (because he really just wants to go back home where he eats), and I praise him and hand him a carrot from his back. Now he tries to guess where I want him to stop and he looks back at me for a carrot. He remembers what I want and he even stops by my car when I get back because he remembers and it's easier for me to un-tack him there and not have to carry the saddle to the car. I mostly walk while riding. It's great exercise for my back. it really is physical therapy and therapy for the mind and spirit as well.
Thank you for your "horse" story. I have ridden a few times, maybe 2 or 3, and know they are wonderful animals. I have had dogs, big dogs, and find they are very gentle and loving. The more you know the breed and how they do things you will fall in love with them and they with you. Good luck to anyone wanting a care giving four legged friend.
@jenniferhunter I had to come back today and re-read your response. I am going through a very challenging time in my life and I remembered your post. Thank you, your words brought peace to my mind today. Gentle hugs, hope you are doing well.