After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Something to Be Thankful For

It’s Thanksgiving. For me, that means a James Bond marathon, delicious, warm, yummy food, and a relaxed day. (And if I had a more football enthusiast family, it would totally mean a wheelchair tackle game… But I don’t, so each year it simply entails my recounting how wonderful it would be if we did that). Then, of course, there is thinking about all of those things you are thankful for. While there are a plethora of blessings, this Thanksgiving, I am simply so grateful it is not last Thanksgiving.

Last Thanksgiving was, well, interesting. The day before, I was released from the hospital on a strict antibiotic plan to treat my seventh long blood infection (it lasted so long because one of the top-rated hospitals in the country continually missed it… For lack of testing for it, not for a lack of being aware of the symptoms… That is a whole other story). Anyhoo, I was back at my local hospital, with my doctors who had been taking care of me for the past eight years. (Thankfully, they were willing to clean up the other institution’s mess. Still bitter? Just a touch.)

Back to the relevant, I was on my fourth antibiotic, as that I was allergic to the previous three. We knew I was already reacting to this one, but since a Claritin every three hours was keeping the puffy lips, insane itchiness, and scratchy tongue under control, it was hoped I would be able to make it through the holiday weekend, before being admitted back into the hospital to try yet another medication.

Our orders were simple: stay home until my throat started swelling shut. At that point, my mother was to throw me in the car and drive as fast—and safely—as possible to the hospital. She was told to call my head doctor, who would call the Infectious Disease specialist, and they would both meet us there. No pressure. I googled for how to know your throat is swelling shut before it was actually closed help. (Note: there really is no good research on that subject.)

Since Mama had been with me in the hospital day and night for the previous nine days, and seeing no hope that we could be home all weekend, she went around like a crazy person trying to get our life caught up, simultaneously prepared again for another potentially long hospital stay. To say the least, by two p.m., I was taking two Claritin every two hours to keep the symptoms at only “annoying” levels.

Now, there had been no time to go grocery shopping, laundry was a priority, and let’s just say that a Thanksgiving feast was not. That’s when the biggest Thanksgiving gift occurred. Our friends and neighbors, who like us have family that live elsewhere, often join us for the holiday meal. This year, they brought all the cooking, hot and ready to serve, over. To us. And it was delicious. And lovely. And so not very many dishes.

The 28-hour home leave was fated to end when Camelot woke me up at 4 a.m., because the back of my tongue was swollen and stuck to the top of my mouth. I hadn’t heard my coughing or choking. Camelot got left-over turkey in his breakfast. He was very thankful for that.

This year, I’m just thankful that was in the past, though my neighbor can really cook a thanksgiving feast!

It's The Holiday Season

Knowing How to Drop a Leash