About Connect: Who, What & Why

Mayo Clinic Connect is an online community that connects people. In the About Connect page, find out more about members, mentors and the community. Meet the team of Mayo Clinic moderators and how the community is managed.  Review the community guidelines and learn how you can get the most from your Connect experience.

Twice a month, a member of your Connect community is featured in the Member Spotlights. Follow the About Connect page to get updates about members and the community.

PUBLIC PAGE
3 days ago

Finding Relief with Fellow Patients: Meet @gardeningjunkie 

By Teresa, Volunteer Mentor, @hopeful33250

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.

2019.11.5 Janis @gardeningjunkie Connect member spotlight

TERESA: What brought you to Mayo Clinic Connect?

@gardeningjunkie: I learned individuals must become involved in self education about their diseases so they can ask their doctors the right questions. Doctors are indispensable, but with my chronic autoimmune issues, often prescriptions do not help. By talking with others with the same condition, I have learned from their personal experiences how they treat it and of new and unique treatments that have helped them.

TERESA: What motivates you to take part in the community?

@gardeningjunkie: I began participating regularly on another site where I learned a tremendous amount from others about my most debilitating health issue, eczema. I was so confused after diagnosis and was blessed with several knowledgeable fellow sufferers who mentored me. I have 3 forms of eczema. On this other site, one of my rare forms, Grover’s Disease, is never discussed. In my misery, I was searching for more information on it and found an active discussion on Mayo Clinic Connect where people share their frustrations about treatments that don’t work and how they have found relief. 

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

@gardeningjunkie: In the online communities in which I participate, I feel a comradery because fellow members understand how I feel. I have learned it serves no purpose sharing with family members or friends who feel helpless. It’s depressing for them, plus I do not want to be defined by my health issues. If I need to connect, I can sound off in my anonymous online communities.

TERESA: What groups do you participate in?

@gardeningjunkie: I participate in groups with issues relevant to me: Women’s Health, Skin Health and Joint Replacements.

TERESA: Tell us about a meaningful moment on Connect.

@gardeningjunkie: I came to Mayo Clinic Connect because I found an active discussion on transient acantholytic dermatosis, aka, Grover’s Disease (GD). I was only participating in the Connect community a few weeks when a guardian angel by the username @kimass1 shared life-changing information. This caring GD sufferer gave me my active life back. She told us about a daily herbal treatment that appeared to help some people with GD. I tried it skeptically, because to date nothing ever helped me with the rash, pain, itching and misery of GD. I turned out to be one of the 50% of sufferers it works for. I have shared it with my dermatologists who had never heard of it, hoping they pass it along. If I had not been participating on Mayo Clinic Connect, I would be suffering today. Now, rash-, pain- and itch-free, I have resumed my normal lifestyle. Amazing.

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

@gardeningjunkie: This is easy to answer: Gardening pulled me out of my depression after being diagnosed with chronic lymphocytic leukemia (CLL) at age 50. Surrounded by growing plants full of life and beauty, I found myself praising God for our glorious world and grateful for it. Gardening and working with plants also made me thankful for the time I had been given and the time I had left. I became a master gardener and enjoyed giving back to the community. CLL is chronic and supposedly incurable. However, a few others I know and I have had spontaneous regression. After my blood counts had slowly worsened for a decade, now all blood counts, even the lymphocytes which were previously cancerous white cells, are normal. This is a very rare occurrence, and I never had any treatment. I believe the peace and joy I got from our glorious world helped with the healing. My hematologist-oncologist is naturally cautious and refuses to call it gone. He calls it preleukemia and continues with my follow-up, as he hasn’t had a case like mine. So, every six months now for 21 years I drag myself to the blood lab for testing. Still, I always have a sense of dread with each test.

TERESA: Tell us about your favorite pastime or activity.

@gardeningjunkie: Gardening.

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

@gardeningjunkie: I have 2:

  1. “When will you learn, it’s going to make you burn?” I made this jingle up and repeated it dozens of times a day early on and still do occasionally, reminding myself to be true to my anti-inflammatory diet. It helped brainwash me into passing the candy bowl by or when salivating watching my family eat the desserts I bake. As of this month, it’s been one year that I’ve followed this now lifelong diet, and my sugar craving is gone!
  2. “I felt sorry for myself because I had no shoes, until I met a man with no feet.” This proverb, said to be Jewish, Italian or Indian, is my all-time favorite. I have several autoimmune diseases and other issues, and I have been humbled reading from others in online communities who are surviving with greater afflictions.

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

@gardeningjunkie: My husband and I are snowbirds with two homes. Each is surrounded by natural beauty overlooking majestic bodies of water with spectacular views, and, of course, enough land for my landscaping projects. We have always been boaters — and still are —  but sadly, there’s no more waterskiing for us, as our joints won’t take it. Both locations are close enough to good medical, shopping and airports. Out West, we belong to a Jeep club with adventurous trail runs. We also do some off-roading with four-wheelers or side-by-side vehicles  — our two-wheel motorcycle days are over — in the wide-open, semimountainous Bureau of Land Management  property surrounding our land. This land looks much as it did at the time we started coming to the area in the ‘60s.   

I am also an avid rock collector and builder of rock walls and gardens. We love to read and belong to book clubs, and we try to save time each afternoon for a good read. Birds fascinate me, and I feed birds of all types at each location; out West, I throw out seed to feed a minimum of 75 of the lovely Gambel's quail each morning. Our grandchildren adore each of our locations, as it is nonstop zip-a-dee-doo-dah fun. Retirement is a full-time activity.

See more Member Spotlights.

@gardeningjunkie

Thank you for taking the time to be interviewed! It was great having the opportunity to get to know you better. I'm sure the rest of the Mayo Connect community will find inspiration and help from your story as they read it! Finding help for a rare diagnosis is difficult at best and we can all be encouraged by the way you pursued help.

By the way, I love the picture, the landscape is outstanding.

COMMENT

@gardenjunkie I loved your profile that Teresa did. Glad to get to know you a little better God is good 🙏❣️😇

COMMENT
@hopeful33250

@gardeningjunkie

Thank you for taking the time to be interviewed! It was great having the opportunity to get to know you better. I'm sure the rest of the Mayo Connect community will find inspiration and help from your story as they read it! Finding help for a rare diagnosis is difficult at best and we can all be encouraged by the way you pursued help.

By the way, I love the picture, the landscape is outstanding.

Jump to this post

I did notice one important miss-print in my answer to question 3. It should read "I don't want to be defined by my health issues", not "do want". What I mean by that is I prefer for others not to focus on my health. I am more than my health issues.
Hope is what pulled me though some of my darkest times and perhaps stories of my successes will inspire others to feel hopeful and not give up.

COMMENT
@gardeningjunkie

I did notice one important miss-print in my answer to question 3. It should read "I don't want to be defined by my health issues", not "do want". What I mean by that is I prefer for others not to focus on my health. I am more than my health issues.
Hope is what pulled me though some of my darkest times and perhaps stories of my successes will inspire others to feel hopeful and not give up.

Jump to this post

I am sure that your successes will inspire others!

COMMENT

@gardeningjunkie– Greetings. It's nice to meet you. I do not believe that our paths have crossed yet. My husband has GD, but not as severe as yours. I will look you up and see how I can help him more, and get to know you more. Your story is one of hope that is the personification of Connect. Thank you.

COMMENT

@gardeningjunkie Great spotlight! We have both been involved in some groups, I assume the joint replacement ones, so it's very nice to get to know more about you. The picture is gorgeous, I assume that is close to your western home, and how fortunate you are to have two homes, both overlooking the water.
Your attitude is so wonderful, I admire that. We all need to be positive about our lives, no matter what we are dealing with.
JK

COMMENT
@merpreb

@gardeningjunkie– Greetings. It's nice to meet you. I do not believe that our paths have crossed yet. My husband has GD, but not as severe as yours. I will look you up and see how I can help him more, and get to know you more. Your story is one of hope that is the personification of Connect. Thank you.

Jump to this post

I will respond more completely about what I learned on the Grover's Skin Site. My sister also has dealt with a minor case for years, no more than a mild itch and small rash under her breasts and not interested in bothering with cilantro smoothie. For me and about 50% of the others severely affected folks this daily drink has been amazing. Also good that it has no negative side effects if it doesn't help.

COMMENT
@gardeningjunkie

I will respond more completely about what I learned on the Grover's Skin Site. My sister also has dealt with a minor case for years, no more than a mild itch and small rash under her breasts and not interested in bothering with cilantro smoothie. For me and about 50% of the others severely affected folks this daily drink has been amazing. Also good that it has no negative side effects if it doesn't help.

Jump to this post

@gardenjunkie Boy Id be in trouble I cant stand cilantro so glad it helps you and others.

COMMENT
@gardeningjunkie

I did notice one important miss-print in my answer to question 3. It should read "I don't want to be defined by my health issues", not "do want". What I mean by that is I prefer for others not to focus on my health. I am more than my health issues.
Hope is what pulled me though some of my darkest times and perhaps stories of my successes will inspire others to feel hopeful and not give up.

Jump to this post

Hi @gardeningjunkie and @hopeful33250, I corrected the typo in the article.

COMMENT
@lioness

@gardenjunkie Boy Id be in trouble I cant stand cilantro so glad it helps you and others.

Jump to this post

@lioness. I don’t care for cilantro either. I have read that it’s one of those things that people either love or hate, no in-between. Out taste buds certainly vary.
JK

Liked by lioness

COMMENT
@contentandwell

@lioness. I don’t care for cilantro either. I have read that it’s one of those things that people either love or hate, no in-between. Out taste buds certainly vary.
JK

Jump to this post

@contentandwell

COMMENT

@contentandwell sorry finger hit reply by mistake. Another tasteI don't like are avocados so I freeze small pieces and use in my smoothie ,makes it thicker and good

COMMENT
@lioness

@contentandwell sorry finger hit reply by mistake. Another tasteI don't like are avocados so I freeze small pieces and use in my smoothie ,makes it thicker and good

Jump to this post

@lioness. I do love avocados but if I was to calculate the price per avocado used, since many go beyond being usable, I figure I must be paying about $4 per avocado! I pay between $1.50 – $2 each and at least half end up in the garbage.
JK

COMMENT
@contentandwell

@lioness. I do love avocados but if I was to calculate the price per avocado used, since many go beyond being usable, I figure I must be paying about $4 per avocado! I pay between $1.50 – $2 each and at least half end up in the garbage.
JK

Jump to this post

@contentandwell I get the ripe ones and scoop out a teaspoon , wrap in plastic wrap and freeze for my smoothie

COMMENT
@contentandwell

@lioness. I don’t care for cilantro either. I have read that it’s one of those things that people either love or hate, no in-between. Out taste buds certainly vary.
JK

Jump to this post

Surprisingly after drinking it daily now since March it is not noticeably nasty. No big deal. We both know if we are suffering enough we make ourselves do things that could help us and in time it's just part of our daily routine.

COMMENT
Please login or register to post a reply.

Invite Others

Send an email to invite people you know to join the About Connect: Who, What & Why page.

Please login or register to send an invite.