Kelly Freeman | The Dysautonomia Project

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Ordinary Woman, Extraordinary Life: Kelly Freeman

kelly freemanIn September of 2011, following a root canal, Kelly Freeman began experiencing tingling, numbness, faintness, heart palpitations and seizure-like episodes that landed her in the hospital. The doctor ran several tests, including blood work, an MRI, chest X-ray, stress test and spinal tap. After having all normal results, he explained that Kelly was just having panic attacks. He then wrote a prescription for Xanax and recommended counseling. Just prior to being discharged from the hospital, Kelly stood to get dressed and her heart rate jumped from 65 to 140, causing the attending nurse to run into the room.

“You don’t have to go home if you don’t want to,” the nurse told her. It was as if the nurse knew she shouldn’t go home. But what else was she to do? Go back to a normal life?

“After my short stay in the hospital, everyone expected me to recover and return to my normal life,” Kelly explains. “Up at dawn, armed with a pot of coffee, I would head to the office after dropping the kids off at school. At the office, I had back to back meetings, a power lunch combined with a quick trip to the store to pick up a needed item at home, conference calls on the hands-free system in my car. After work, I would be running late to take the kids to their after school activities, while I return emails and text messages on my phone, then rushing home to whip up a nutritious dinner before I head off to music practice at church. Once back home, I’d debrief with my hubby for a few minutes of ‘couch time,’ all before the two hours of returning emails and prepping documents on the computer before bed.

“I expected to recover and return to my normal life. But God had a different plan in store for me.”

Kelly experienced continued symptoms, especially of fatigue and faintness, which worsened. She also became hypersensitive to light, touch, sound, motion and activity.

“One time during that first week, I tried to go to Target with my husband to pick up a few needed items. When getting out of the car, the wind was like a million pin pricks on my face. I held his hand and kept my head down just to enter the store because my brain couldn’t process all the stimulation of cars moving, people walking, colors, sights and sounds. It was as if opening my eyes would be a million more pin pricks in my brain. Once inside, the fluorescent lights were blinding and the many noises (such as background music, people talking, carts rolling, etc.) were an overwhelming clamor for my attention. I kept worrying that I’d walk into someone pushing a cart because my brain was not processing the incoming sensory information as fast as the people around me were moving. On top of it all, within a few minutes I became so weak and exhausted that I asked my husband to take me back to the car because I felt as if my knees would buckle. I was going to faint. I spent the next 20 minutes in the quiet car waiting alone as my husband finished our shopping. I realized this was not normal. I had to do something.”

Dysautonomia-BookAfter changing doctors, Kelly began intensive research about her symptoms and engaged in discussion with her new medical team. In November of 2011, Kelly was diagnosed with dysautonomia, a disorder of the Autonomic Nervous System (ANS). Kelly actually suffers from two types of dysautonomia: POTS (Postural Orthostatic Tachycardia Syndrome) and Neurally Mediated Syncope (NMS) along with other related conditions such as migraines, sleep apnea, fibromyalgia, irritable bowel syndrome and more. After another almost week-long visit to the hospital with more tests and medication trials, Kelly was relieved to know there was a physiological cause.

“It wasn’t all in my head,” said Kelly.

The first half of the battle was finding a diagnosis. The second half of the battle is not so easy—finding a remedy. One problem for those suffering with dysautonomia is finding a doctor who understands dysautonomia. The biggest problem with dysautonomia is that even the doctors who specialize in autonomic disorders don’t understand what causes them. And, although there is a possibility patients suffering with dysautonomia could go into remission, there is no cure.

“I spend many days in my PJs in bed feeling much like I’ve come down with a bad case of the flu,” Kelly says. “Sometimes I wonder if my friends, colleagues and family think I’m just lazy, but honestly I don’t worry too much about that. I simply don’t have the energy to worry.

“I also don’t have energy to miss much. Some people wonder if I’m bored with nothing to do at home, and frankly I’m not bored at all. It takes a lot of energy for me to do the most basic tasks, so now I’m focused on the little things. Things like talking with my children about their day, getting a shower, making a cup of coffee, making a meal or getting groceries.”

“I don’t live with dysautonomia in the sense that I have it,” says Kelly’s son Casey. “But dysautonomia has greatly affected my family because my mother has it. I am challenged everyday with being patient with my mother and trusting that God has a plan that is greater than my own.  If it were up to me, my mom would never have contracted dysautonomia, but through God’s amazing grace, she has written and published the first book on dysautonomia and helped found, “The Dysautonomia Project” a non-profit organization dedicated to helping people who have this horrible illness. So, the hardest thing for me as the oldest of my siblings is to put aside my longing for a normal mother and trust that God has a plan for me and my family.”

“Thanksgiving and prayer are the antidote to worry,” Kelly shares. “I get to do a lot of things that my normal life didn’t allow me to do. Today I’m thankful for being able to see, for being able to walk, for being able to hear, for being able to have a one on one conversation with my son. It is a beautiful thing to hear my children pray for me. And I have been so blessed to appreciate the many things I used to take for granted. And what’s more, I’ve been richly blessed by the love and support of family and friends.”

Freeman-Family“Having a wife with dysautonomia has opened my eyes to how many people suffer from chronic illnesses,” said Nate Freeman, Kelly’s husband. “Neighbors, friends, relatives; the number of people suffering is shocking when I start to look. In the past, my weakness was having a critical spirit. I used to be critical of the stories from people who ‘are always sick.’ I thought, if they would just exercise more, or eat better, or be more motivated . . . they wouldn’t be so sick. This couldn’t be further from the truth. I’m now careful to listen, more respectful, and never use platitudes or give false hope. God has shown me that ‘all things do work together for good for those who love the Lord and are called according to His purpose,’ but God’s ‘good’ may look very different than my definition. God’s ‘good’ is farther reaching and of greater significance.

“My wife’s father died of cancer at age 57. During his suffering, I witnessed hundreds of lives get pointed toward Christ. Now she is following in His footsteps in pointing people to Christ. Would that have happened without dysautonomia? God’s work is far bigger than I would have dreamed. Despite my weakness, God has strengthened my faith by watching Him work during this illness. Oh . . . and I’m pretty stinking proud of my wife too.”

Kelly concludes, “During my first hospital visit I was in the Word and came across Scripture which reminded me I am crucified with Christ, therefore I no longer live, but He lives in me. In 1991, I surrendered my right to life, my right to be healthy, my right to be understood, and everything else we think we deserve. This is His life. My job is to follow the path He has placed before me without question or doubt.

“I wouldn’t wish this journey of suffering on anyone, and some days I can’t believe how painful and hard it is, but I am blessed beyond measure with perfect peace and the love of Christ through family and friends who have come alongside me to help me through this journey. I cling to His plan for my life and the amazing grace of Jesus which I do not deserve.”

Kelly has been determined to build the awareness of dysautonomia. In October of 2014, Kelly launched The Dysautonomia Project with the help of about 200 volunteer physicians, patients and community leaders from more than a dozen states. The Dysautonomia Project is a not-for-profit organization aimed at speeding the time to diagnosis and treat dysautonomia at the community level. In addition to speaking to many groups, physicians and writing dozens of articles, Kelly has co-authored a brand new book, The Dysautonomia Project, with Dr. David Goldstein of NIH, a world-renowned specialist in autonomic medicine and Dr. Randy Thompson of Pensacola, who developed POTS 18 years ago and is a specialist in dysautonomia. The book will help physicians and lay people to better understand dysautonomia.

Kelly is an ordinary woman living an extraordinary life. Her desire to be used of God—despite her physical challenges—serve as an inspiration to all who know and love her.

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