My name is Diane. My body went numb as I collapsed into the chair. The doctor’s mouth moved, but I heard nothing. He stammered, “Are you alright?” I had no answer. My life changed forever at the age of twenty-three. I had no idea what the mysterious diagnosis of “Cryoglobulinemia” meant or even how to pronounce it. The words, “incurable, life threatening, chronic” overwhelmed me. The way I looked at the world and my purpose for living changed in an instant.
Prior to Cryoglobulinemia, I taught special needs children, coached swimming and track. I was close to realizing personal and professional dreams, while making a difference in young people’s lives. I sang for thousands at a popular theme park. My childhood sweetheart and I married when I was 19, and were enjoying our newly built dream home and planning a family.
One terrible Friday in 1990, a severe pain stabbed my left hip. Later my left foot began to ache with two red spots on the arch. Sunday I stepped out of bed and fell to the floor. While crawling for help I noticed that my left foot had doubled in size and was hot to the touch.
My husband rushed me to the emergency room where I was told that I “must have banged it without realizing it.” The attending physician prescribed painkillers, crutches, rest and ice. I would later discover that icing was the worst possible treatment and the painkillers only made symptoms worse. Each week a new body part became inflamed and covered in hives, rashes, or red/hot spots. I was sent to specialists and admitted to hospitals every few weeks, poked and prodded and tested for lupus, leukemia, rheumatoid arthritis and AIDS…
Concerned about the possibility of gangrene, two doctors contemplated amputation of my peculiar legs. When the attacks came on with sudden vengeance, all I could do was watch my body deteriorate. Flu-like symptoms made working, socializing, shopping, and performing the simplest of daily chores excruciating. In addition, the gnawing pain of fibromyalgia seemed more extreme. Like dragging around a thousand pound ball, no matter how hard I tried to kick it away, it shackled me and threatened to plunge my life into ruin.
On Tuesday, May 11, 1993, the University of South Florida hosted a conference. Some of the world’s leading physicians in the field of rare and difficult to diagnose diseases attended. Invited to participate, I was told to keep a journal of my symptoms. One doctor after another examined my body and studied my file. My symptoms got worse right before their eyes, and in the end, the group ordered a specialized blood test. I was sent home to wait for the results, again.
Almost three years after those two red spots first appeared on my foot, the doctors concluded that I suffered from a rare, incurable blood disease called CRYOGLOBULINEMIA, cryo-cold, globul-clotting, anemia-blood. It’s an excruciating autoimmune blood clotting disorder that destroys vital organs and gets worse when I stand, sit with my feet dangling down or my body gets cold. They also confirmed vasculitis, purpura and Raynaud’s Phenomenon with Chronic Fatigue Syndrome and the list grows on. I was told to minimize all exposure to the cold and avoid ANYTHING that would inflame the potentially life-threatening symptoms.
Even though I felt relief over finally getting a diagnosis, I felt dismay because a fulfilling life now seemed impossible. I sunk into a deep depression and lost everything that mattered. My divorce and subsequent homelessness led to suicide attempts and confinement in a psychiatric hospital. I prayed for death to come quickly and I didn’t care how. I just wanted the mental, emotional, spiritual and physical pain to end. In complete despair, God answered me by directing my focus from my misery to Jesus and His promises for my life. I read the Bible and learned that peace, protection, good health, wholeness, and provision could be mine despite the storm that surrounded me.
One day I made the choice to leave behind old behaviors, thoughts, and labels. I embraced my second chance at God’s saving grace and the opportunity to live my life well, in spite of my dire health problems. As I prayed and read the Bible, I found refuge from my worldly distress and incredible changes occurred. The truth of God’s Word sank in, and whenever I felt fear, I starved it with faith.
The song of my heart returned and music helped to combat the battlefield in my mind. One song especially ministered to me: “Take My Hand and Walk,” by Jean Luc Lajoie. With this encouragement, I dispelled the devil’s claims that I was, “Alone, unlovable, deserved to be sick, God was mad at me and the world would be better off without me…”
During this profound time with God, my hope was restored and old dreams were replaced by new ones. I learned to embrace my brokenness and saw my life as God saw it—worthy to be lived. I’ve survived the darkness and learned to be a light to help others find their way. Whereas my brokenness once dragged me into the pit, it now lifts me up into the open arms of a loving God who has an important purpose and plan for each life.
The disease hasn’t left yet, but sometimes wellness doesn’t mean the absence of sickness. I overcome by letting my mess become my message and my tests become my testimony. Five years ago I rescued a broken dog who rescued me back by becoming the world’s first rescued Italian Greyhound Service Dog helping a woman with an incurable blood disease. She helps me to more safely participate in life.
Together we go where no woman and dog have gone before while helping others find joy despite their circumstances. We visit prisons, schools, orphanages, nursing homes, hospitals, … wherever we are invited to share our message of hope. Since few are acquainted with the illness, I’ve written several books including: Gracie Comes Home and God Made Only One of Me, developed a web site, to inform and help, as well as an outreach non-profit organization called Second Chance with Saving Grace.
I’m strong and courageous in spite of persistent challenges because I’ve learned the key to happiness: focusing not on myself but on the needs of others, just as Jesus did. Stay Strong and Courageous!
Love Paul, Gracie & Diane
Transforming lives with help and hope!
Published: March 2009
February 2013: Diane has created The Cryoglobulinemia Vasculitis Organization to help other cryoglobulinemia patients. Visit the website.
To read more stories, please visit the Vasculitis Stories landing page.