February 5, 2018

Kelley, NATX Member Since 2017

Since attending her first NATX meeting in June 2017, Kelley has been an outstanding supporter: attending every possible meeting since, taking a leadership role in the small fiber neuropathy support group, and volunteering her time and abilities in any possible capacity. Kelley’s enthusiasm for being part of the neuropathy community would especially impress anyone learning about her daily struggles with idiopathic autonomic and small fiber neuropathies, as well as mitochondrial myopathy (“mito”).

At age 20, Kelley began experiencing blood pressure so low that it would cause her to pass out. The doctors could not figure out what was going on but told her she needed a pacemaker. At 25 digestive issues started, and her sweat glands stopped working. Then in her 30s, she developed congestive heart failure and extreme fatigue. It took 12 years before she was finally diagnosed with mito, explaining her fatigue. Frustratingly, however, it did not explain all of her symptoms. Everything Kelley told her doctor fell into the “chronic illness bucket;” she was told over and over by her doctors that her “bone crushing” leg pain must be related to her already diagnosed chronic illness.

Finally, 8 years later in fall 2016, Kelley was able to find a neurologist in Austin who listened to her list of symptoms and properly diagnosed her neuropathies—she had probably had autonomic neuropathy for 20+ years. Her doctor gave her a NATX brochure, which she carried around for 6 months before she could face coming to a meeting. Kelley explains, “It was huge for me to get involved with NATX because I never wanted to label myself with a chronic illness.” After already having dealt with the “crushing blow” of her first chronic diagnosis, she needed help to keep a healthy attitude for her emotional and physical well-being.

“I try not to use the word ‘pain.’ I try to use the word ‘discomfort’ because I feel like I can get caught in that dark place of feeling hurt, thinking about the things that I’ve lost and that I can’t do anymore—  it’s too easy to do that. My family’s lost a lot, more so than I have. It’s an everyday struggle to just focus on the things that I can do and not the things I can’t— that helps put things into perspective for me. I’ve lived a good life. I think that I have done 50% better since I’ve found NATX, to be able to talk and laugh with people who get me. What I hope honestly is that I can help somebody who’s new to dealing with neuropathy. It’s ok to be afraid, and embarrassing stuff happens. It’s a new adventure, it’s accepting the new us, and accepting the loss of the old.”