A day without painting is like a day without sunshine: Meet @SusanEllen66

ROSEMARY: What brought you to Mayo Clinic Connect? 

@SusanEllen66: At the very end of 2015, I was diagnosed by my dermatologist with a very rare autoimmune disease that affects only 3 people in a million. My dermatologist, who is also a pathologist, recognized the diagnosis when he read the punch biopsy report and said I had cutaneous polyarteritis nodosa (CPAN). He sent the biopsy to the dermatology department at Mayo Clinic in Phoenix for confirmation. They agreed. 

Unfortunately, because CPAN is so rare, medical students are barely taught anything about it. So, I had to become an expert in my own condition. Mayo Clinic Connect was a vital resource for me. I used it for answers and to exchange experiences with other members. 

ROSEMARY: What motivates you to take part and allows you to feel comfortable sharing and to be open with the community?

@SusanEllen66: The act of helping others where and when I can is very rewarding! I do not have the healthiest body in the world. I was born with a weakness for everything. Now in the last part of my life, it is one crazy, rare, unusual thing after another. In just over the last year, I’ve been diagnosed with Alzheimer’s dementia, ataxia, and now I am displaying all the symptoms of stiff person syndrome, a rare autoimmune neurological disorder.

So, I have lots of experience dealing with many health situations. I feel comfortable passing along my experiences and I do not hesitate talking about the bad as well as the good.

ROSEMARY: What support groups do you participate in?

@SusanEllen66: The support groups I am most active in include: 

• Aging Well
• Autoimmune Diseases
• Brain & Nervous System
• Chronic Pain
• Fibromyalgia
• Neuropathy

There are probably a few I missed. I promise you that if I have chosen to join a support group, I’mI looking to get help as well as to give support to others.

ROSEMARY: Tell us about a meaningful moment on Mayo Clinic Connect.

@SusanEllen66: In 2021, I was not mentally feeling like myself. After testing, I was diagnosed with mild cognitive impairment (MCI). Just two years later, I felt my brain function was getting worse. For me, it’s not so much about my memory but rather my executive function that is affected. I became messy. Apathy was my new normal. I knew that wasn’t me. So I had all the tests again. This time the diagnosis was changed to mild Alzheimer’s dementia. 

When the patient living with MCI, or mild Alzheimer’s, tries to do research about their disease, all the information available is directed at helping the family caregiver. I am really feeling hurt. I keep hearing a speaker refer to me as ”your loved one” or “the patient”. What about me, the person with the condition?

So, when I could not find a section for people who have dementia on Mayo Clinic Connect, I started one myself here:

• Support Group for Those of Us Living With Mild Dementia 

There have been over 100 posts and the discussion is very enthusiastic and supportive. Our brains may be having problems, but we are still “home” and want a place to connect and share.

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

@SusanEllen66: I’m surprised when people write posts requesting a specific diagnosis from fellow members (patients and family caregivers), as if we are doctors. We’re not able to interpret blood test or imaging results, nor should we. But we can give support and help people formulate questions they could ask their doctor to learn more.

ROSEMARY: What energizes you, or how do you find balance in your life? What activities do you like?

@SusanEllen66: Beginning 2018, my life totally changed. I lost my daughter to drug overdose. Her children were young teenagers at the time. They live with their dad, an amazing man, and are now thriving. I mourn the loss for them most of all. The same year, I also got divorced, sold and bought a house.

After the divorce, I was thrilled to be living alone. Freedom is liberating for sure. I decided to try painting. I always felt I was creative, but hadn’t up til then pursued anything. So now, I order a 8 x 10 inch canvases and some cheap brushes and sit down in my art studio to paint just about every day. My version of the popular saying is “a day without painting is like a day without sunshine.”

In addition to painting, I’m on a quest to do as many 1000-piece puzzles as I can. I bought a puzzle board so I don’t have to crane my neck. I work on puzzles during breakfast, lunch, and dinner. 

Tracing my family ancestry really caught my attention. I have been working on a multi-family tree for about 12 years. Wikitree offers a free global tree that anyone can use or look at. If you want to check your family, join Wikitree. It’s free.

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

@SusanEllen66: Yes, my favorite Bible verse from John 3:16 “for God loved the world so much that he gave his one and only son so that everyone who believes in him will not perish, but have eternal life.”

ROSEMARY: What food can you simply not resist? 

@SusanEllen66: Chocolate

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

@SusanEllen66: I have lived in only two different locations during my 74+ years. Both places are tourist hot spots. I don’t think I could live in an area that doesn’t have fine dining, entertainment, and unique features. 

I was born in Brooklyn, NY, but have since lived in the Phoenix, AZ area for 38 years. 

Each place has their unique features and characteristics. I have grown used to the arid, desert climate and appreciate the giant saguaro cacti that guard the landscape, along with the rattlesnakes, scorpions, and the javelina. This is my home. 

ROSEMARY: What about friends?

I’m almost 75 years old, and recently a new friend told me I’m an interesting person. I never thought about myself as being interesting. My mom taught me, by example, to always “do different.” I live by that.

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