The periodic swollen ankles were baffling. John Thomas, a cargo logistics specialist at Baltimore-Washington International Airport, could never remember twisting or injuring his feet. Yet every now and then an ankle would inexplicably swell.
Thomas dismissed it as an odd irritant until one day in December 2012 when joints all over his body – feet, legs, hips, hands – suddenly swelled. With some joints five times their normal size and a sense of exhaustion overwhelming him, the 37 year old headed to the emergency room. Over the next six days, a stream of doctors proposed possible diagnoses – including rheumatoid arthritis, tuberculosis and lime disease – while a string of tests disproved every theory. Finally, a doctor advised him that x-rays had revealed masses in his lungs and the cause was likely late-stage lymphoma.
“They literally started giving my wife pamphlets on how to deal with the death of a loved one and how to care for a terminally ill loved one,” John said.
A biopsy, however, proved John was cancer free and helped verify that he actually had Sarcoidosis.
High doses of prednisone and pain killers helped ease the situation, but not without complications. Although John felt he tolerated prednisone well, “my family thought I was a lot moodier,” he said. Meanwhile, morphine caused his urinary system to malfunction, elevated his heart rate and sent him back to hospital with a distended bladder that was 30 cc away from rupturing.
John subsequently tapered back his drugs and now relies on ibuprofen, acetaminophen and periodic doses of Tramadol or Dilaudid to manage the flareups and swollen, painful joints that keep him bedridden two to three times a week.
“The thing that I have troubles with is because you get bedridden, you get isolated. I don’t socialize nearly as much as before I got sick,” he said. “But the toughest factor of all is not working.”
Although John’s job had become a telecommuting position months before he got sick in 2012, his ongoing flareups eventually prevented him from retaining the position.
“I have been fighting for a disability claim for the last two years.” he said. “Sarcoid people have a problem getting disability claims approved unless their lung function is really bad. It’s hard because sarcoid has not affected my lung capacity. For me, the big problem is joint pain so I am not even your typical sarcoid person which has caused frustrations when it comes to getting disability.”
Currently working on his third appeal, John said previous applications have been rejected because reviewers believed “there is not enough medical information to support my claims even though my primary doctor, my rheumatologist and even my pain management doctor said that I can’t work.”
John attributes his ability to manage the challenges of Sarcoidosis to the tremendous support he receives from his wife, father and children, as well as other Sarcoidosis patients he has met online.
“Support is key,” he said. “If you feel you are alone with this disease, you are not. You can find a support group.”