The story of Julie
I never felt well for very long. I would have these unexplainable Acute medical conditions ranging from moderate to severe. Then the lung infections every summer that took multiple courses of different antibiotics to and months to recover started . Then it happened. I felt something unnatural and alien in my brainstem, next day came wheezing so loud it could from across a room, next day I was coughing up blood. It was summer again and my pulmonologist was going on vacation. Gave me medication and told me to get a CT scan at my leisure. Weekend came and I was lying on my bathroom floor thinking this is how they find people dead and we wonder why they didn’t get help. I did get help and was sent home. I don’t know how I did it but managed to get a CT scan. At that point I could no longer stand up straight and coughing up more blood. I’ve been through the antibiotic game before so I called my pulmonologist’s partner who didn’t know who I was but once he saw my CT scan he screamed at me to get to the ER immediately. He said it was the worst pneumonia he’s ever seen at the very least. I didn’t have to wait for the first time. I had a needle in my arm within five minutes pumping me the kitchen sink in my veins. I was quarantined, told I had the ugliest, strangest looking double pneumonia ever seen (10 years before anyone heard of COVID). The outskirts of both of my lungs were completely occupied, the bases were started to collapse. Once every contagious disease was ruled out I first hear the word Sarcoidosis. It took years to recover, I lost a piece of my lung and every part of the life I had. Going back everything made sense – Acute Liver calcification facial, Acute paralysis, Acute sinus polyps that grew back after surgery, Pleurisy. Every time I got sick and took months to recover. Every job I lost due to unexplainable infections. The fatigue and the overwhelming feeling that something was seriously wrong that was always dismissed as psychological. One doctor said he wished I had a rash because it would really pinpoint if I had a disease. The rash finally came in 2018 which looked like mimic syphilis and I had to Saran Wrap my leg with a combination of expensive creams like a Pork Tenderloin. The CDC refuses to list Sarcoidosis in their Diseases and Conditions Index. They should have a separate Index for every rare disease since we are misdiagnosed and if we are lucky enough to get a diagnosis all it does is validate it wasn’t in our head or random Acute episodes. I was told it was in my head so many times that while in quarantine and everyone else ordered to wear a mask I was still pleading to the doctor that I was not faking. My disease is going nowhere fast and neither is the development of any new humane treatment options. It’s Rare Disease Day every day in our lives.