Floods are often used metaphorically. In literature, flooding is a tool that indicates a need for a new start, a beautiful and ethereal destroyer. It’s something everyone can easily envision. We can all relate to the need to breathe and the fear of dark and rising water.
My city is underwater. This flood is not metaphorical; it is real and devastating and historic. There is currently no way to get in or out of my town. Historically high tides are running through the streets. Just a few blocks from my home, people are being rescued from several feet of water by front end loaders. A fire truck had to be towed after getting stuck. Just Revelations level insanity. The craziest shit you’ve ever seen. Except I’m not there to see it.
People who have been following MastAttack for a while will know that I spend a fair amount of time in Florida. Three of my best friends, all of whom have mast cell disease, live in different cities dotting up the gulf coast of the state. Nicole has a horse farm in the middle of nowhere with no wifi and shitty reception. It’s the perfect place to lay low and duck out of life for a bit. I flew down the Wednesday before New Year’s with a return trip booked for yesterday. But I didn’t make that flight and I don’t yet know what flight I will make because I have been dealing with my own Revelations level insanity down here.
Last Saturday, Nicole and I drove from Ocala to Sarasota to visit my dear Kristina and her fantastic parents. On the way, we stopped and got breakfast. I got something I eat regularly without trouble. Thirty minutes after I ate, I knew something was wrong. The situation quickly evolved from GI cramping to excruciating epigastric pain. I took meds and applied Benadryl liberally.
We visited with Kristina and her family all afternoon which was great and not Revelations level insanity. For people who don’t know, Kristina is a mast cell patient who had a stroke in her brainstem in October 2015. The stroke caused Locked In Syndrome, a condition in which the patient is completely aware and cognitively normal but is unable to move or speak.
Kristina’s family was told that she would never recover any function. The good news is that that was a bunch of garbage because she’s regaining function and body control every day. It is an incredibly slow process but she is doing it. She now gets all her nutrition by mouth instead of via G tube. She is stable without IV meds. She is building core strength and working on standing. She communicates by a special computer that will read aloud what she types. She is able to leave the house more now and attends church regularly.
My GI tract was pretty sore when we left Kristina’s house and I realized shortly after that I had a GI bleed. This is not unusual or impressive for me; I bleed more often than I don’t at this point. I figured taking it easy and eating minimal solids for a few days would resolve it. It didn’t.
I woke up on New Year’s Eve feeling very sore but otherwise okay. I went for a walk around the farm. I did some yoga. Nicole and I went to her parents’ place for dinner. By the time dinner rolled around, I was feeling pretty nasty. I went back to the farm to medicate heavily and go to bed.
I had been puking and having diarrhea for a couple of hours before I started to think something was very wrong. I was sure that this was not a reaction and figured I had picked up a stomach bug somewhere. I was shivering and achy and unable to get warm. I called Nicole in the middle of the night and she came over with a thermometer and BP cuff. I had a fever of 102.5.
When you have a central line, every fever is scary. I don’t get them a lot and it really scares the shit out of me when I do. A line infection can be fatal. Even when it’s not, it can takes months to recover from one. I knew I needed to go to a hospital 1000 miles from home where no one knew me. I was scared of a line infection. But I was more scared of being subjected to ineffective care from providers who didn’t understand my disease and wouldn’t listen to me.
I remember getting into the ambulance. I do not remember arriving to the ER. I was super tachy with high blood pressure and a screaming high fever. We all immediately assumed this was sepsis. They didn’t fight me about my mast cell needs which is lucky because I doubt I would have been able to do anything about it anyway. I was hallucinating. The GI symptoms continued when a vengeance. They got my records from Boston and admitted me later that day.
The following day, I tested positive for CDiff, a severe GI infection that is almost always caused by recent hospitalization or recent antibiotic use, neither of which applied to me. I recovered so quickly it was almost shocking. I was discharged last night.
I had to reschedule my flight home because of the hospital admission. I was not healthy enough to travel. Boston was forecast to suffer an unreal storm the following day. In New England, the storm doesn’t always deliver the fury promised by meteorologists. This storm delivered. My flight for tomorrow was cancelled. It looks like I’ll get back to Boston Monday or Tuesday.
I am very paranoid about getting stuck somewhere without adequate medication or supplies. I am so paranoid about it that I have an excel spreadsheet that tells me how much to bring of everything based upon 150% of expected use. Fortunately, this means that I am pretty well stocked and can afford to wait out a few extra days. There are a few things I didn’t pack enough of. After a lot of anxiety and fretting, I have managed to cobble some of it together with the help of local patients. We will to figure out the rest of it tomorrow.
I have struggled with my fear about my disease since the day I was diagnosed. It’s not rational but it’s real. I have literal nightmares about forgetting my medication or supplies when I travel. I have literal nightmares about getting sick far from home and ending up in a strange hospital that doesn’t believe what I tell them.
It used to seem to me that it should get easier to cope with this fear but it never has, at least not for me. I keep waiting and waiting to happen across the moment when I am not afraid. When I can take a full breath. When I don’t feel like I am being pushed into the ground. When something unexpected does not immediately signal emergency. But I never do because there is no moment. That moment does not exist.
I hope my city get its head above water before I get home. I hope I get my own head above water, too.