Empowering patients to advocate for themselves: meet @kariulrich

Aug 24, 2018 | Jen, Alumna Mentor | @sandytoes14 | Comments (13)

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.

2018-8-20 Kari Connect Member Spotlight Horseback Image

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?

@kariulrichYou 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?

@kariulrichThis 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?

@kariulrichThe 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?

@kariulrichSome 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.

@kariulrichI 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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Hi Kari, I just saw this. I randomly get alerts in my email. I see you are going through a challenging time and I just wanted to say I hope things get better and send you some hugs. You have always been such an inspiration to me. My MALS is under control right now, it is all the dysautonomia that is really bad and I am dealing with so I am never really on here. I just wanted to reach out though when I saw this and let you know I will be thinking of you and sending healing thoughts and hugs.


@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.

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@kariulrich Gentle hugs for you too. I am glad that you find comfort re-reading my post. I am helping a family member with some medical issues these days and I'm a caregiver to my elderly mom and I take her to appointments which keeps me running. My horse is tucked into his winter blanket. He is getting older and has special feed to try and keep weight on him through the winter, and he's happy to see me every time. I forgot that I had an apple in my coat pocket which was meant for him, and I had given him all the carrots I had. I had him in the barn to put his heavy weight blanket on and he was nosing and sniffing me and used his nose to push on my chest and say, hey where's my apple? I didn't get it, and it was only after I got home and was putting my gloves back in my pocket that I found his apple. He will also steal a carrot out of my pocket if it sticks out. When it gets warmer, I'm going to bring a big ball and see if I can get him to play with me. He is cute and fuzzy right now.


@kariulrich It's so nice to get to know you better. I see your picture and posts occasionally but generally, we are involved with different areas of Connect. Having a rare condition must be very challenging. Since being a part of Connect I have become aware of so many conditions that I never even heard of before. When I feel down at all it makes me aware that we all have our burdens to bear.

I have never had many opportunities to be around horses but I have always wished I had. If not for recently discovering that I have somewhat advanced osteoporosis I would look into riding now, but at this point, I would be so afraid of falling that it would not be the right thing for me. I used to love downhill skiing too and met my husband at Killington ski area in Vermont. I always thought I would ski again some day with my son who is an avid skier but now I know that is not to be either. Do you get beyond MN in skiing? If you ever come to New England we will have to meet. I am in NH.

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