I’ve had psoriasis since my early 20s, and in my mid-30s I showed symptoms of psoriatic arthritis. I’d seen a dermatologist off and on, with little relief, but never a rheumatologist. My hands went from normal to claw-like in three months, and my mouth was fused shut in six. At that point, it took a full year before I could get in to see a rheumatologist. My GP began testing for this and that while we waited. The first time I saw my rheumatologist, from here on “Dr. W”, we discussed my jaw; because of the high level of inflammation, he said, an oral surgeon wouldn’t be able to do anything until the inflammation was more controlled, so as we started treatment, we waited. That was spring of 2013. My jaw had already been fused shut for a year.
In February of 2014, I hurt my back so severely that I ended up in the ER, and then I was admitted to the hospital for five days. I was released to a skilled nursing facility for in-patient rehab. When you enter such rehab, every therapy department evaluates you: physical therapy, occupational therapy, and speech therapy. When the speech therapist came to my room, she was shocked as she watched me eat. My jaw was completely fused shut. Have I said that already? Completely. There was no movement possible. I could not chew. Everything had to be cut into tiny pieces, and I would swallow it whole. I was losing weight rapidly due to chronic, severe pain, and due to poor nutrient absorption. The speech therapist wanted to get me to an oral surgeon that week, afraid that every meal was a choking risk. I worried that if I were in an accident and unconscious, doctors would not be able to get a breathing tube down my throat.
Dr. W, the speech therapist, and my GP all brought their weight to bear on the issue, and I got into an oral surgeon in June 2014. Dr. J wanted to get me into surgery that week, but unfortunately, the process for TMJ replacement is a bit more complicated than that. My sister and I had to travel an hour and a half to the hospital where the procedure would take place, to have a mold made of my jaw. It couldn’t be done that day, so the doctors would take a scan of my jaw on day one of the surgery. Usually a mold would be taken six weeks prior to surgery, the patient would have the first surgery and her jaw wired shut for three weeks, and then the second surgery would put the new joint(s) in. The company that makes the artificial joints needs two months to make them.
So in September 2014, I had the first surgery. The doctors chiseled the ankylosed joints, put silicon spacers in place, and wired my jaw shut. I was supposed to wait two months for the second surgery, but this was not the end of the saga.
I developed complications and ended up in the ER four times in five weeks. Instead of returning to life, and work, as the doctors had predicted, I sat on my sister’s sofa and watched television. If you haven’t watched daytime TV lately, let me spare you the horrible boredom. There is nothing to watch except talk shows and Food Network. Cooking shows. With my jaw wired shut.
(pause for laughter)
While watching Ree and Ina and the champions of Chopped, I was eating everything through a straw. A NutriBullet will liquefy anything, by the way. My sister made meatloaf and mashed for the family? Add a little milk and whirr away, and there you have drinkable dinner. A slice of cake and a cup of coffee — drinkable dessert. Everything was the consistency of split pea soup.
I had the second surgery in November 2014. The spacers were removed and the new joints put in place. The wires and metal tabs were removed, as well. But the agony wasn’t over yet. My jaw had been fused shut and wired shut for more than two years at that point. The muscles and tendons had contracted and shrunk from disuse. I was given a device that I could put between my teeth to force my jaw open. I have never felt such pain before or since. Four times a day for weeks. Heat before, ice after. And morphine, which I refused to take unless in surreal torment. I hate the way it makes me feel.
And I still wasn’t allowed to eat. It was close to a month later before I was allowed to eat more than soup, noodles, and applesauce.
All of this time, as I watched the Food Network with deep longing, I came to a decision. I would learn to cook. The Year 2014 was a very trying year; 2015 became the Year of Trying New Things. Cooking lessons, yoga, travel, a blog, joining several local groups to meet people, etc.
You can still see the scars, if you get close enough. But really, it has become an almost unbelievable saga that makes people laugh as I tell it. Never doubt, though, that the scars are indeed there.