It is hard to adjust to the idea of being sick. Not so much the daily activities of being sick but of identifying as sick and viewing the world through shaky, feverish lenses. But you do it because adaptation is instinctive. One day, you think, “I could get used to this.” And then you do.
It was harder for me to adjust to the idea of being very sick. Sick was manageable. Very sick is not. And I am very sick.
I took medical leave last fall. Things got out of control really fast. New complications stacked up quickly and crushed what control I still had. Every problem I ever had was worse than before and a whole bunch of new ones showed up. I slept in soaked sheets, shivering with fever dreams, waking shaky and foggy. I couldn’t keep food in the top of my GI tract and couldn’t get it out of the bottom. I took meds by the handful.
I have been sick like this before. The symptoms were different but the degree was the same. When I first applied for short term disability, I expected to return to work in six weeks. I have recovered before in shorter time. I thought if I could adjust my meds, add in some new ones, and get plenty of rest, that I could get back to baseline.
That’s not exactly what happened. Some things improved but my GI issues got worse. I suddenly had gastoparesis. I started having a lot of pain with eating, even things that were mast cell safe. I had epigastric pain on top of my normal abdominal and visceral pain. I have started having chest pains too from difficulty swallowing and food getting stuck in my esophagus. Things changed. My body changed. And my ability to handle it changed.
Around 11pm in Tuesday night, I was sitting on my couch, watching the end of a movie. I had had a completely unremarkable day. I ate normal safe food in normal safe amounts. I took my meds on time. I hadn’t done anything strenuous or upsetting.
As I was sitting there, my lower lip started to swell inside. Then my tongue. I’m not super prone to swelling and it’s not always part of my anaphylactic presentation. I went to the bathroom to inspect my mouth in the mirror. I wasn’t having any other symptoms so I swished some cromolyn and went back to my movie.
A few minutes later, my airway swelled. Things happened very quickly from that point. I was having trouble swallowing and I was producing a ton of saliva. My voice got raspy. I had hives all over my neck and chest and my blood pressure started dropping. I have epipens everywhere at home – next to my bed, on my bathroom vanity, on my desk, the kitchen table, my coffee table, my purse – and fortunately they were close enough for me to reach. I injected into my leg while on the phone with 911. My airway opened again and I used IV rescue meds while waiting for the ambulance to arrive. They transported me to the emergency department of the local hospital where I receive all my mast cell care.
I started rebounding about three hours later and needed a few more doses of IV rescue meds. I hung out overnight until I could talk to my doctors in the morning. I went home Wednesday.
I had an appointment with my mast cell GI specialist on Thursday. In news that shocks no one, my GI tract is pretty inflamed. It is swollen and so sore that even touching it causes reflexive guarding. (Reflexive guarding is when your abdominal muscles engage when you try to touch the abdominal organs because they are sore and inflamed.)
I am off food for a few weeks at least and am currently living on homemade rehydration solution and nutritional supplement drinks per my doctor’s instructions. (For mast cell patients in a similar scenario, I have ordered Orgain, which I have used in the past when I couldn’t eat. It is vegan, soy-free and organic. I have received excellent customer service from them in the past and they took my health issues very seriously. I generally try not to specifically endorse products but I think a lot of people in this scenario may be interested.) If this doesn’t calm things down, I will do elemental formula for a while, and then potentially TPN (IV nutrition).
Yesterday morning, I woke to a call from my disability caseworker “checking in” that I was going back to work on Monday. I didn’t laugh at her but it’s mostly because of how anxious these conversations make me. I informed her that I had been removed from my home on a stretcher less than two days before. I told her to call my mast cell specialist who agreed that I was looking at a months time table for returning to work, not weeks.
There was never a future for me that did not involve top to bottom GI failure. My GI tract is so dysfunctional from years of inflammation and damage that it has become a disease unto itself.
I knew this would happen. I just didn’t think it would be now.