Finding Relief with Fellow Patients: Meet @gardeningjunkie 

Nov 8, 2019 | Teresa, Volunteer Mentor | @hopeful33250 | Comments (33)

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.

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@gardeningjunkie

When we fly to the southwest for the winter, the true Snowbirds from very cold places like Minneapolis or Canada who come here laugh at us when we identify as Snowbirds. They call use from south Missouri Frostbirds! Growing houseplants is a challenge, much more difficult than when they are in their natural state outside, but they can bring much joy and interest when you care for them inside.

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@gardenjunkie When I lived in Pa we had several snowbirds that flew the coop of winter for the south Fla. especially. I moved to Calif. I do grow indoor plants and even had vegetables I grew Now I'm going to put a terrarium to use with cactus plants soon .

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@gardeningjunkie

On top of many issues I have had Reynauld's since an early age. Cold is painful for me. I have many tricks to keep fingers warm, but having cold eyeballs at 72 inside is a first I have heard of. I have a idea that might help. I have learned the best way to keep hands and feet warm (of course with gloves and warm shoes on) is wearing a warm hat! Our bodies will save all our warmth for our brain and sacrifice the extremities. If I wear a warm hat my hands and feet stay warmer longer. Maybe it could help your eyeballs.

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@gardeningjunkie a hat is worth a try! I know it sounds odd but when I am cold I always feel it in my eyeballs!
I have never understood the lure of Florida but as I age I can understand spending time there during the winter. We are planning some time either there, the Caribbean or Hawaii at some point. It won’t be more than two weeks though. My vote is Hawaii.

Where do you go in the southwest? That would make sense for us since we will be visiting our son in Denver in the beginning of February (Super Bowl weekend).
JK

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Another idea to consider is warm ear muffs.
We have a home at Lake Mohave. Starting from the north it is the 3rd lake in the Colorado River chain of lakes, about a 2 hour drive south of Vegas (where Lake Mead is). We are in the Black Mountains and some years get a dusting of snow, but it doesn't last the day.
Yes I would vote for Hawaii too. No contest. It's gorgeous, I've been to 3 of the islands and it's my favorite tropical resort for relaxation, beauty and today one must consider safety. Caribbean although lovely is much more complicated. So simple to stay in the US! Plus as nice as the Caribbean is it is a 3rd world experience.

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@gardeningjunkie

Another idea to consider is warm ear muffs.
We have a home at Lake Mohave. Starting from the north it is the 3rd lake in the Colorado River chain of lakes, about a 2 hour drive south of Vegas (where Lake Mead is). We are in the Black Mountains and some years get a dusting of snow, but it doesn't last the day.
Yes I would vote for Hawaii too. No contest. It's gorgeous, I've been to 3 of the islands and it's my favorite tropical resort for relaxation, beauty and today one must consider safety. Caribbean although lovely is much more complicated. So simple to stay in the US! Plus as nice as the Caribbean is it is a 3rd world experience.

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@gardeningjunkie I have a call in to the doctor at Mass General who advises people, particularly post-transplant patients, on travel. She is an infectious disease doctor. I have been very reluctant to go to the Caribbean again now because of my immunosuppressants. We often travel with another couple and they are opposed to the long flights to Hawaii, but have suggested Naples, FL as an alternative so we are considering that. Hawaii would be my vote but we do enjoy traveling with them.
JK

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@contentandwell

@gardeningjunkie I have a call in to the doctor at Mass General who advises people, particularly post-transplant patients, on travel. She is an infectious disease doctor. I have been very reluctant to go to the Caribbean again now because of my immunosuppressants. We often travel with another couple and they are opposed to the long flights to Hawaii, but have suggested Naples, FL as an alternative so we are considering that. Hawaii would be my vote but we do enjoy traveling with them.
JK

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I've never been to Naples but it sounds like a good choice. Not too hot this time of year. Easy with US travel and good medical in a resort area.

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@contentandwell

@gardeningjunkie I have a call in to the doctor at Mass General who advises people, particularly post-transplant patients, on travel. She is an infectious disease doctor. I have been very reluctant to go to the Caribbean again now because of my immunosuppressants. We often travel with another couple and they are opposed to the long flights to Hawaii, but have suggested Naples, FL as an alternative so we are considering that. Hawaii would be my vote but we do enjoy traveling with them.
JK

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@contentandwell
How about breaking up your trip. I'm guessing you'll fly out of Boston(?) so stop in Los Angeles, Las Vegas or San Francisco or wherever for a while to break up the trip.
Jake

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@jakedduck1

@contentandwell
How about breaking up your trip. I'm guessing you'll fly out of Boston(?) so stop in Los Angeles, Las Vegas or San Francisco or wherever for a while to break up the trip.
Jake

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@jakedduck1 Great idea, we thought of that when we went to Hawaii in 2017, but we have spent a lot of time in LA and SF so didn't feel a need to go there, and I don't think there were flights direct from LV to Hawaii. That time we ended up just doing one extra day in Hawaii, an R&R day after out long day of traveling. If we were to go now we would probably spend a night or two in Denver with my son.
I wish Grand Canyon was not so far from the big airports, my husband has always wanted to go there. It's about four hours from LV and four hours from whichever airport in AZ so that was not a good option.
The other couple just seems very opposed to such a distance but now I realize why -- they want to go for five days. Hawaii is a long way to go for only five days. They travel a lot so this is just a brief, sunny break for them.
JK

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@contentandwell

@jakedduck1 Great idea, we thought of that when we went to Hawaii in 2017, but we have spent a lot of time in LA and SF so didn't feel a need to go there, and I don't think there were flights direct from LV to Hawaii. That time we ended up just doing one extra day in Hawaii, an R&R day after out long day of traveling. If we were to go now we would probably spend a night or two in Denver with my son.
I wish Grand Canyon was not so far from the big airports, my husband has always wanted to go there. It's about four hours from LV and four hours from whichever airport in AZ so that was not a good option.
The other couple just seems very opposed to such a distance but now I realize why -- they want to go for five days. Hawaii is a long way to go for only five days. They travel a lot so this is just a brief, sunny break for them.
JK

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@contentandwell
Fly from Vegas to the Grand Canyon. I took a helicopter once. Great experience. If you go be sure to walk on the Grand Canyon Skywalk. No cameras or cell phones though. 5:45 hrs to Hawaii from Vegas.
Jake

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@jakedduck1

@contentandwell
Fly from Vegas to the Grand Canyon. I took a helicopter once. Great experience. If you go be sure to walk on the Grand Canyon Skywalk. No cameras or cell phones though. 5:45 hrs to Hawaii from Vegas.
Jake

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If you plan to do the Grand Canyon it's getting late in the year; better off waiting until mid- April.

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@gardeningjunkie

If you plan to do the Grand Canyon it's getting late in the year; better off waiting until mid- April.

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@gardeningjunkie @jakedduck1 I have been thinking about a trip there in the spring. I figured we could fly into LV, stay there a night or two, drive to the Grand Canyon, stay there a couple of nights (I presume that would be enough) and then drive to AZ, stay a couple of nights, and fly home from there.
My husband and I are not gamblers so have no big desire to see LV but it could be interesting for one or two nights. There are good shows there too of course.
JK

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