Advocates on Steps of Congress 2013
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Kate Hannon: Good Enough is the New Perfect

When Kate Hannon of Sacramento, California, talks about living with scleroderma, there's a calmness and confidence in her voice that leaves little doubt she has learned some things over the past 15 years.

Kate Hannon, VoiceI really try not to be ‘woe is me,’ and I look for things to be positive about,” Kate, 53, said. “I’m not always good at it every single day, but there are always good things to talk about, and it’s really important to not lose sight of that.”

Kate was much less self-assured about her diagnosis back in 2000.

“I was horrified of what was to come,” Kate said. “The information out there at the time was that scleroderma meant certain death, and there was no way to live well with this disease.”

Of course, she and so many other patients know much better now.

Kate’s symptoms began with Raynaud phenomenon in 1990. Many painful occurrences of Raynaud’s, along with additional symptoms such as a calcium deposit in her elbow and spotty groupings of blood vessels on her face, led to a diagnosis of CREST, or limited scleroderma.

“The good news is that my condition has stayed under control,” Kate said. “I’m noticing small changes, but nothing great from year to year.”

Raynaud’s is a daily risk, no matter the season or temperature, and Kate stays vigilant in order to avoid long-term nerve and blood vessel damage. She puts gloves and hand warmers on every packing list for travel and carries them in every bag she owns.

Kate doesn’t downplay the challenges that come with adapting to her condition and the potential fear that threatens to keep her from living well.

“Every time something new comes up a new symptom or a new feeling you always wonder if it’s the disease,” she said. “But I can’t assume it’s the beginning of something big. I make a note of it, research it, and add it to my notes in my medical binder for my next rheumatology visit.”

Early on, Kate’s doctors also screened her for and identified symptoms related to Sjögrens Syndrome. With it, she experiences dry eyes and dry mouth, but Kate says “foggy brain” is the most severe problem. It even affected her career in finance.

“In 2002, I started noticing that I was having trouble focusing and managing my everyday responsibilities the same way,” Kate explains. “I was forgetting things, and there were times I just couldn’t access my business brain.”

She tried for a while to hide her struggle. She worked longer hours to stay on track, but it was obvious that she couldn’t continue her job at that pace, and she eventually stepped down.

Not always being able to think clearly still impacts every aspect of Kate’s daily life. Electronic calendars, to-do lists and reminders are critical tools for helping her manage the loss of memory. She’s also learned that frustration and stress don’t help the moments when she needs to clear her mind and refocus.

“I try to recognize when it’s happening and be flexible enough so that I can put down what I’m doing and come back to it later when I can actually think clearly.”

It’s no surprise, with everything they face, that most people with chronic illness suffer from some form of anxiety or depression. Kate has sought professional help over the years to cope with the emotions and uncertainties of scleroderma.

“It doesn’t go away, it’s always there,” she said. “But depression is almost helpful to me in its mildest form to teach me to stay aware of how I’m feeling and what I’m thinking.”

She admits she still struggles with really low moments.

“It’s normal to live with sadness and fear. But I’ve taught myself how to take the energy out of those moments and find the good.”

Kate was less willing, however, to take advantage of the resources the Foundation offers to its members. In 2002 she called for information about local support meetings, went to one, and didn’t call again for three years. “I didn’t want to see sick people,” she said.

Then in 2006, she attended a seminar hosted by the Northern California chapter. She raised her hand to volunteer, and the rest is history.

“I went from zero to 100 miles an hour,” she said with a laugh. She jumped right in as treasurer to help the chapter with day-to-day bookkeeping, creating financial reports, and planning fundraisers.

The chapter’s signature fundraiser is the Stepping Out to Cure Scleroderma Run/Walk, which has earned hundreds of thousands of dollars for scleroderma research. The 13th annual event in Sacramento is set for September 12, 2015.

Volunteering in that capacity is one way Kate stays social and avoids isolating herself, which she says is an important part of living well with her condition.

“Let people know what’s happening, keep them involved, and accept their offers of help,” she said.

Kate will tell you her sister, who lives a few hours away, is her rock. But the real hero of Kate’s story is her Havanese dog, Hula. She says a lot of the laughing she does every day is when she’s playing with Hula.

“She saved my life,” Kate said. “She knows when to show up when I’m not feeling well. She knows when I need to play or when it’s a good time to take her for a walk to get out of the house. She’s my partner, my bright light.”

Scleroderma hasn’t prevented Kate from doing the things she loves, but she has adapted to the realities of her condition, and learned to let go of perfection.

“I accept now that ‘good enough’ is the new perfect for me,” She said. “That means exercising for five or ten minutes instead of a full half hour is good enough. Having the energy to go to one grocery store instead of shopping around for the things I couldn’t find is good enough.”

She says laughing at herself instead of taking situations too seriously is a good opportunity to let go.

“It’s more harmful to my health not to let go.”

Alternative therapies also help balance Kate’s day-to-day living. She regularly visits an acupuncturist. Meditation helps clear the brain fog, reduce stress and relieve some of the chronic pain. Sound therapy listening to music and even Native American drumming aligns her body energy. Kate took a Reiki course and learned how to practice light energy on herself for healing.

Of all Kate’s recommendations for living well with scleroderma, two of them go hand-in-hand and might be the simplest.

“Go outside every day. I think that’s really essential for mental and physical health.”

She says it can be difficult to step outside the house when it looks cold or breezy or she’s having a low day.

“But I’ve never had a day when I went outside and was sorry I did, even for just a few minutes.”

And while you’re out there, listen to the sound of birds. If you don’t have any that visit regularly, get a bird feeder.

“They’re always happy and singing. It’s a really good reminder that they can always find something to be happy about.”

And so can Kate.

 

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