There hasn’t been any huge revelation in regards to my health. Still taking this battle day by day and attempting to stay as positive as possible. I’ve had a continual virus/cold/cough since July and it’s taken a toll on my body. Currently, I have a horrendous flare up of my autoimmune disease and it’s painful as all hell.
My sister came to town from NY last weekend and we spent a solid 24 hours being bratty and wreaking havoc on my mother. It’s one of our favorite past times. I was also able to see my best friend who drove down from Oakland and we all met up to have a drink or two.. The night was filled with tons of laughter, a shaker full of salt and champagne gummy bears.
PFAPA stands for Periodic Fever Adenitis Pharyngitis Apthous ulcers. When I have a flare up of PFAPA, I come down with a high fever ranging from 101-103 for about 10 days and with the fever comes mouth ulcers, swollen glands and a very sore throat. At one time I had gone an entire eight months without any flare and as of the last year, I’m lucky to make it two weeks. The current flare up is probably the most painful, with three ulcers on my lower lip, a couple on my tongue, about five on my gums and one giant one on the back of my throat. I have had a 102+ fever for the past 6 days, swollen lymph nodes and terrible ear pain that is from the ulcer in my mouth that is close in proximity to my inner ear.
Last night I was finally able to eat some food after three days of only liquids. Mashed potatoes felt like eating a three course meal and tasted like heaven on my tongue. I ate about six popsicles after to numb the pain from eating, well, the first one was to numb my mouth, the second, third, fourth, fifth, and sixth ones were just because I’m a fat kid. I emailed my immunologist photos of my current flare and hope she has some sort of resolve as to a better way to gain nutrients while dealing with this hell. I have posted some photos of what happens to my mouth during these flares, I apologize for the graphic nature of these photos.