For nearly 18 years, Heidi Junk searched for an explanation of her sporadic and bizarre medical episodes. Since her early twenties, she had experienced periods of “electric bullets” shooting down her spine, odd tingling in her arms or legs, decreased hearing in one ear, localized pain, compromised balance and one baffling episode when one hand ballooned so that “it looked like a cartoon hand, the Hamburger Helper hand.”
Doctors thought the symptoms might be caused by MS, but multiple tests failed to find any sign of the disease.
Searching for a medical explanation “was like chasing a ghost,” Heidi said. “It humbles you. You are belittled in a sense. You know something is not right, but there is no evidence.”
Frustrated, she decided not to go back to a doctor unless an episode was crippling her. In late 2012, shortly before she turned 40, Heidi reached that crippling stage. An athlete, Heidi gradually lost her ability to run due to a persistent cough and increasing lung spasms. A chest x-ray suggested she had walking pneumonia. Through two weeks of treatment, however, her condition continued to worsen. Further testing confirmed an interstitial lung disease, ruled out cancer and concluded that Heidi had Sarcoidosis.
“I was told this was good news. It was treatable,” she said.
Treatment of Heidi’s Neuro-Sarcoidosis, however, has proven to be complex, incomplete and sometimes an all-consuming activity. She has contended with a string of medications, treatments and procedures in order to maintain lung function, combat neuropathy in her legs and fingers, combat an occasional flareup of dactylitis (literally, “sausage finger”) and remove a Sarcoidosis-induced, grapefruit-sized growth on her liver.
She has also contended with side effects from those treatments that ranged from moderate digestive problems to a sudden attack of colitis that left her hospitalized, and included mood swings, depression, sensitivity to sunburns, bloating, persistent hunger, and a drop in potassium levels that triggered severe muscle cramps.
“I feel like I have been fighting tooth and nail to get care and take care of myself. Dealing with this disease is a battle in so many different ways,” Heidi said.
But it’s a battle that Heidi has learned how to fight. A self-described data person, she has researched the disease and its treatment, questioning the benefits, success rates and side effects of every medication, treatment, test and procedure. She has sought out expert doctors by asking trusted physicians for recommendations, designated a doctor to oversee her total care, and worked hard to ensure that important medical information is shared among different specialists and medical systems. Heidi maintains a complete set of her test results and medical notes, organized by organ/system and medical test.
She has also learned to interpret her own tests, for example realizing that changes in certain liver markers can signal a deterioration of her disease.
Beyond the core medical work, however, Heidi has also focused on how to live well with Sarcoidosis.
“This is the time to show yourself some compassion,” she said.
Sarcoidosis can be painful, exhausting and demoralizing. So Heidi has made thoughtful efforts to create a good quality of life despite the disease. She simplifies the demands on her time, builds adequate rest into her schedule and focuses on things that are truly important to her.
“I had to come to grips with the reality that my life is different and that I have limitations,”she said. “But different doesn’t have to mean worse. Figure out what brings you joy and make sure you foster that in your life. For me, it’s a love of outdoors and connecting with people. Focus on what you can do.”