Our journeys differ; our shared goal is to move ahead: Meet @walkinggirl

Oct 30 8:00am | Teresa, Volunteer Mentor | @hopeful33250 | Comments (25)

member spotlight, meet @walkinggirl

TERESA: What brought you to Mayo Clinic Connect?

@walkinggirl: I found Mayo Clinic Connect by accident well over a year after a septal myectomy at Mayo Clinic. Looking back, it would have been helpful to know about this patient community around the time of my referral in February 2022. I had been living with diagnosed hypertrophic cardiomyopathy (HCM) for several years without any impact on my life. Until that fateful February, I was uninterested in knowing more than the general details of the condition.

TERESA: What motivates you to take part in Mayo Clinic Connect?

@walkinggirl: New members to the forum are often confused, anxious, scared, trying to make sense of their diagnoses, and looking for direction on their next steps, just as I was. Helping people by referring them to sources of information, sharing experiences, offering encouragement and suggesting practical hints that may help them feel like they are in more control and that they are not alone. 

TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@walkinggirl: Our discussions about so many aspects of HCM on a relatively anonymous forum is a safe way to connect with other big-hearted people. I can identify with what others are experiencing even though each of our experiences is unique.

TERESA: What support groups do you participate in?

@walkinggirl: I participate in the Hypertrophic Cardiomyopathy (HCM) and Visiting Mayo Clinic support groups. I like to share aspects about visiting Mayo Clinic in Rochester, insurance and travel to Rochester. 

In addition, I am a member of the Hypertrophic Cardiomyopathy Association where I am a Face of HCM.

TERESA: Tell us about a meaningful moment you've experienced on Mayo Clinic Connect. 

@walkinggirl: I had a meaningful moment when I realized that the care plan is unique for each of us. That made me feel I was being treated as an individual. I also learned that each of us have HCM, yet each step is experienced differently. Some Mayo Clinic Connect members found certain steps along the way easier than I did and vice versa. 

Many thanks to Mentor Debra @karukgirl for her valuable input and for being a great role model!

TERESA: What surprised you the most about Mayo Clinic Connect?

@walkinggirl: The most surprising realization was that even though my fellow big-hearted HCM members share the same diagnoses, treatments, surgery, and recovery are so different for each of us. 

TERESA: What energizes you, or how do you find balance in your life?

@walkinggirl: Achieving a balance between social times and quiet, alone times are both essential in my life. Realizing this helps me strive to maintain it.

TERESA: Tell us about your favorite pastime or activity.

@walkinggirl: I have many pastimes and activities, so choosing a single favorite is impossible! I am a Volkswalker and have completed my goal of walking in all 50 states and all 51 capital cities ten years ago. I volunteer, like to be with family (husband, son, daughter-in-law and grandson), play Mah Jongg, travel, love photography (have won photo contests), garden, geocache, cook healthy meals, bike, paddle, garden, read, do counted cross stitch, genealogy, listen to music (I used to play piano quite well), and solve puzzles.

TERESA: Do you have a favorite quote, life motto or personal mantra?

@walkinggirl

  • Be kind. 
  • Do it now, crystal balls are unreliable. 
  • The glass is half full rather than half empty.

TERESA: What do you appreciate the most in your friends?

@walkinggirl: I have several groups of friends, surprisingly with few overlaps. I appreciate that we like to listen to and talk about almost everything!

TERESA: What food can you not resist?

@walkinggirl: Soft chocolate ice cream!

TERESA: If Hollywood made a movie about your life, who would you like to see cast as you?

@walkinggirl: An actress with red hair and brown eyes. Kate Mara who has curly red hair as I did before I reached that certain age! Julia Roberts sometimes dyes her hair red.

TERESA: What do you love about where you live or vacation? 

@walkinggirl: We live just north of Saratoga Springs, NY, a beautiful small city with historical and cultural significance. There are many parks nearby where we enjoy the outdoors.

TERESA: Puppies or kittens? 

@walkinggirl: We have no pets, but I like puppies.

 

Member Spotlights feature interviews with fellow Mayo Clinic 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.

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Profile picture for scottij @scottij

@walkinggirl
I admire your energy and attitude. Bottle those two things and you can make a fortune though I suspect making a fortune is not high on your list.

Your glass half full/half empty comment reminds me of a time in an Amsterdam bar with a friend wherein we riffed for a long time on different perspectives on the glass and water. We came up with an "ist" list.
The Capitalist: We need to monetize the water and the glass
The Communist: Glass and water belong to state (spoken in a deep Slavic accent)
The Socialist: Water for everyone
The Misogynist: I hate the girly water
The Buddhist: Maybe the water is and maybe it isn't.
The Technologist: Actually, it is not glass but a high-density polymer
The Environmentalist: The water is probably polluted
The Hedonist: The water kind of turns me on.
The Activist: No more water! No more water!
The apologist: I am so sorry about the glass and the water.
And so on.

Grand plans for a poster which could have made us a fortune never came to pass. I guess that making a fortune was not high on our list either.
Best always,
s!

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@scottij We know that making a fortune does not bring happiness. Having enough to pay the bills, provide food, clothing and shelter for our families including quality MEDICAL CARE, giving to charity and having some leftover for extras is enough. Unfortunately ... I can go further but will not.

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Profile picture for walkinggirl @walkinggirl

@lisalucier Please look at http://www.ava.org for information! I do not know where you live, I hope you would be able to find a club near you. We are all about Fun, Fitness and Friendship!

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@walkinggirl What a great idea. I have procrastinated implementing my desire to visit all state capitals and this sounds super motivating to make it happen.

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Thank you so much for sharing about yourself and your journey. I had never heard of Volkswalking. I am intrigued and curious about it! I am so glad you have family that is loving and supportive and I am sure that many people in this community have been inspired and have found help through your comments and shares. I always wanted red hair! Three of my best friends from childhood had red hair, different shades. I remember being a bit envious! I enjoyed reading and learning about you and your journey here. I, too, have found this community to be a great help and comfort. Nice to meet you!

Ginny

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Not even sure where I would fit in having Factor V Leiden, Protein S Deficiency, Reynolds
Phenomena, Osteoporosis, just found out Osteoarthritis in knee with small tare in the mulysis, as well as rare blood Rh Negative . Has Juvenile Rheumatology Arthritis with Rynoids Phenomena at age 10 Plus THJ. I am now told I have a smal fracture in the knee with a small tare in the mulysis, the x-ray and and ultrasound showed with no arthritis, they went further with an MRI to find out Osteoarthtis in the knee. 2 Options knee replacement or injections. Does anyone out there perhaps in same situation know of other options it would be much appreciated to hear from you. I am 76 years seasoned
Thankyou for your time
Forever young

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Profile picture for Janell, Volunteer Mentor @jlharsh

@walkinggirl What a great idea. I have procrastinated implementing my desire to visit all state capitals and this sounds super motivating to make it happen.

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@jlharsh It will be a fun goal! Tours of Capitol buildings are usually superb, and most states have their State Museum nearby.

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Profile picture for foreveryoung3691111 @foreveryoung3691111

Not even sure where I would fit in having Factor V Leiden, Protein S Deficiency, Reynolds
Phenomena, Osteoporosis, just found out Osteoarthritis in knee with small tare in the mulysis, as well as rare blood Rh Negative . Has Juvenile Rheumatology Arthritis with Rynoids Phenomena at age 10 Plus THJ. I am now told I have a smal fracture in the knee with a small tare in the mulysis, the x-ray and and ultrasound showed with no arthritis, they went further with an MRI to find out Osteoarthtis in the knee. 2 Options knee replacement or injections. Does anyone out there perhaps in same situation know of other options it would be much appreciated to hear from you. I am 76 years seasoned
Thankyou for your time
Forever young

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@foreveryoung3691111 Welcome to Mayo Clinic Connect! We’re glad you’re here. You might find better answers to your questions in the bone health area so I’ll find it for you!
https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/ This page only shows SOME of the discussion groups so get busy reading! Again, Welcome!

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My family came from north of Saratoga Springs . A beautiful area and so full of history !

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Profile picture for foreveryoung3691111 @foreveryoung3691111

Not even sure where I would fit in having Factor V Leiden, Protein S Deficiency, Reynolds
Phenomena, Osteoporosis, just found out Osteoarthritis in knee with small tare in the mulysis, as well as rare blood Rh Negative . Has Juvenile Rheumatology Arthritis with Rynoids Phenomena at age 10 Plus THJ. I am now told I have a smal fracture in the knee with a small tare in the mulysis, the x-ray and and ultrasound showed with no arthritis, they went further with an MRI to find out Osteoarthtis in the knee. 2 Options knee replacement or injections. Does anyone out there perhaps in same situation know of other options it would be much appreciated to hear from you. I am 76 years seasoned
Thankyou for your time
Forever young

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@foreveryoung3691111
Hello forever young: I thought I might be exclusive to that moniker; forever young. I am 80 years and fairly (streetwise) knowledgeable, but I had to read your writing several time before I realized that anxiety/stress and that all to familiar area, the unknown. My older brother receives two shots bi- monthly for knee issues, has atrial fibrillation and a heart monitor, takes injections for diabetes control yet doesn't miss a day of early trout fishing or the first week of Deer hunting in Vermont. He even purchased an old four wheel drive so he could get closer to these activities and save his standing up time.
In other words, I can feel your fear similar to my brothers fear when he felt less mobile. Fear is fear and were both old enough to seek professional wisdom yet need to vent when it creeps near. He would be in constant pain, especially his back, if it weren't for the regular shots to numb everything.
I can't imagine what you must be going through; i never thought I would live this long. I thank the fact that I have good doctors and their staff who are caring and doing their best to keep me going, Sometimes, other than my awesome wife by my side, I am frightened about that unknown, so I take each day as if it were my last week. I wasn't strong enough to live one day at the time. A week I am fairly comfortable with for every day could be our last. Thanks for sharing: Sharings always help others. Joseph

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Has anyone gone from taking Camzyos 5 mg to 10 mg? What are the side effects?

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Profile picture for memphis901 @memphis901

Has anyone gone from taking Camzyos 5 mg to 10 mg? What are the side effects?

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@memphis901 Your question is regarding Camzyos, which I have absolutely no experience with. May I suggest you look at the various other groups in Connect because there are those with Camzyos discussions. Also, you may find it helpful to join 4HCM.org and its Facebook page where others discuss Camzyos. Best wishes!

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