Wendy Foster has been dealing with pain for eighteen years, and for eighteen years her doctors have been unable to diagnosis her. Her unknown disorder began suddenly when she was camping with her family in August 1992 and felt as though she was having a heart attack. When she went home, the results of a pulmonary function test showed abnormal lung capacity. Soon thereafter, she began experiencing pain that would come and go in her neck. Since 2005, Wendy has had widespread chronic pain in most of the musculature of her limbs as well as in her lower back. She suffers from asthma, constant headaches, and severe migraines. Doctors have questioned whether her atypical migraines are transient ischemic attacks (TIAs), “warning strokes” that leave no lasting damage.
Using the vague classification of progressive neuromuscular disorder, her condition increasingly weakens the muscles closest to her torso, including her diaphragm. Although her lungs are fine, the weakness of her diaphragm restricts her lung capacity, making it difficult for her to breathe.
Living with an unidentified condition that causes chronic pain is emotionally challenging and extremely frustrating. While she now has an excellent team of specialists at Yale, many doctors have undercut and minimalized her condition, informing her that she was not sick enough. She remembers walking into doctors offices hoping her symptoms had worsened so someone could say, “Aha, this is what is wrong with you.” Yet for eighteen years, she has seen specialist after specialist and undergone test after test to no avail.
Controlling her pain is challenging because doctors have to treat symptomatically. Although she has not found anything that brings her widespread relief, anti-inflammatory medications do help. She relies on a heating pad every morning and night to alleviate spasms and soothe weakening muscles and arthritis in her lower back. She takes medications for intense headaches and migraines. Treximet seems to prevent a migraine when she feels it coming on, and Dilaudid brings her partial pain relief.
Wendy used to enjoy swimming, riding bikes with her children, camping, and going for walks. She can no longer tolerate the pressure of water on her chest due to her weakened diaphragm, so she is unable to swim or take a bath. Participating in other activities is difficult because her arms and legs tire quickly. This also affects her ability to drive, cook, and clean the house. After twenty-six years teaching preschool at the local YMCA, she had to retire in 2007, because she could no longer lift children, take them into the pool, or even pick herself up off the floor.
Wendy does not let her condition rule her life. She recognizes that accepting her disorder does not mean it has won or has control over her. She accepts her limitations so she can move forward and continue to live life. Through this experience, Wendy has learned that she is stronger than she ever believed possible.
One of the most amazing gifts she has received is her service dog, Alli. After nearly two decades of hearing she was not sick enough and did not suffer enough for doctors to help her, Wendy began to feel insignificant and unworthy. When NEADS (Dogs for Deaf and Disabled Americans) told her she qualified for a service dog, she received the validation she needed. Wendy finally saw that she was deserving of help.
Alli assists Wendy when she needs to get up, and helps her stay calm. With a special bond, they have grown to act as one. “Alli can sense when I am in pain and knows what to do to help, whether that be lying alongside me so I can rub her head, bringing me my keys, or just giving me a warm nuzzle. It’s nice to know that someone is aware of my pain and not tired of dealing with it. I can just be me when I’m around Alli.”
Through NEADS, Wendy has met others living with pain and understands that she fits in somewhere. She is grateful for the way this has changed her attitude, her self-esteem, and her life purpose.
Living by her mother’s motto, “If you don’t feel good, then dress nicely because it will make you feel better,” Wendy is strong and determined to move forward. “I now view myself as disabled, but with the benefit of not always having to feel as though I am. Although living with pain may be difficult at the best of times, it does not have to define me. I move forward because giving in and giving up are not an option.”