One Day at a Time
One Day At A Time 23 days. 23 days spent living in a foreign bed, with questionable greasy hair and an inability to sleep because of the constant noise and intrusions.
There have been 64 days this year and I’ve been in the hospital, in pain, crying and vomiting for 23 of them.
I cannot underscore the misery that is intractable vomiting. This is believed to happen due to my gastroparesis, a gastric motility disorder. When I experience these attacks, I begin vomiting and cannot stop for up to 3 days. I don’t mean I throw up a few times for a couple days. I mean I throw up every 5-20 minutes for 48+ hours. Every sip of icy, diluted Gatorade is a mistake. Mouthwash comes back to haunt me. My own saliva refuses to go down, when it’s really bad.
I can’t get any meds, food or liquids down orally. Sometimes I have a Picc line already in place so I self administer fluids in an attempt to avoid the emergency room, where they know my name. I hate this. I don’t wish to appear every couple weeks crying out for pain and anti nausea meds. But that’s the consequence for this vomiting; I’m too medically fragile to let myself dehydrate for 3 days. Instead I go to the ER & I spend a lot of time on a stretcher in the hallway, surrounded by exhausted-looking staff wearing tight n95 masks and scrub caps.
Gastroparesis can be super dangerous for a person like me. I have an adrenal insuffiency. I take a low dose of steroid every single day of my life. Missing a dose because I can’t keep anything down is dangerous. Plus I have type 1 diabetes. The vomiting and dehydration has caused me to go into diabetic ketoacidosis (or DKA) before, which is a Mary Poppins-.sounding word to describe the fatal condition that occurs when the imbalance of fluids and ketones in my body cause a built up of toxic ketones. If not treated, it can lead to a diabetic coma and death. It requires an ICU hospitalization and that’s where the new year found me in January.
I’ve avoided the ICU the last two admissions and I wasn’t vomiting during my week long stay at NIH. There I dealt with untreated pain and begged for a solution to this unending chest pain and vomiting attacks. My doctor wants to postpone the transplant until we determine a root cause and treatment for the chest pain.
It’s all been overwhelming and awful but a couple weeks ago, we squeezed in a quick trip to Cape May. I’ll admit to sleeping much of it but I had so much fun at the Cape May Zoo with the kids. Leo is almost 3 and suddenly a compelling conversationalist. He rules our world and we are just here for the ride.
We managed a few dinners out, an indoor pool swim and I got to see my friend and her kids. I was tired but okay and honestly I think that’s the best I’m going to feel from now on. Caffeine pills and half a painkiller make up my recipe for success.
One day at a time used to be a mantra I mocked and associated with quitting something: now that I have very little control over my life, I live by it. One day at a time: because tomorrow might be a sick day, but today is looking good. Stay grateful for the good days and remember to pay attention. One day at a time.