Bullous pemphigoid: an autoimmune disease in which your body basically decides that your skin is a foreign object that must be destroyed. It tends to begin as itching and, after about a month, the blisters arrive. There is no definitive cause, but medications, skin irritants, and stress are suspected causes.
STRESS! That thing I had been experiencing at an insane level for months! That was it! It sucked…realizing that I had a horrible disease with a painful, lengthy, and uncertain future…but there was finally a diagnosis! I 100% had bullous pemphigoid and we were going to get it figured out! The ER nurse said she was admitting me because they had a dermatologist on staff. I didn’t get a room until the next morning because they were super busy, so I was put in a “quieter” ER area while I waited. But, despite the constant ER noise and the numerous wake-ups for blood draws and meds, that was the best sleep I had had in months. I had an answer. Things were going to be okay.
Then, once in a room, I met the attending doctor. The guy who, over the next 2 days, would rip that small amount of hope away. First, I was informed that the ER nurse had been mistaken. There was no longer a dermatologist on staff. Okay. That was fine…we could still get the tests done to confirm what I and the ER nurse knew I had, right? Wrong. The attending doctor informed me that he *knew* what I had. Poison ivy. Despite not going into any wooded area, I 100% had poison ivy. And, given that it had been ongoing for months and had not responded to treatment, it was clear that I had been re-introducing poison ivy into my life. No tests were done. Well, correction, LOTS of tests were done. Lots of blood was taken. Lots of results were spouted at me. But no tests were done to confirm or rule out bullous pemphigoid. I was completely shut down. I KNEW I had bullous pemphigoid. I KNEW it was only going to get worse without treatment. But no one would listen. The discharge nurse suggested I leave their hospital and go directly to another one 30 minutes away. Which is exactly what I did. THERE, I was told that, while they would not be admitting me, they had called a dermatologist just a few blocks away and they were expecting me.
I arrived at the dermatologist’s office in tears (and realized I was becoming a natural at this whole ‘public crying’ thing) hoping they would listen but expecting they would shut me down like the hospital doctor. However, after some skin scrapings and a biopsy I was sent away with this: “We will, of course, have to wait for the results to confirm, but I am pretty sure this *is* bullous pemphigoid. The next few weeks will not be easy. It will get worse before it gets better. but we will get you better!”
To be continued…