The Tiger
by Scott Hardie on August 19, 2024
This is the second of four weekly blog posts about diagnoses that have completely changed my life since the pandemic started, after The Dragon.
Last week, I wrote about my liver disease, which doesn't have any direct, detectable signs. It's not as if I feel any pain in my liver, or that I can sense that it's not working in the same way that I could tell right away if, say, my eyes stopped working or my lungs stopped working.
However, the indirect signs, by which I mean the side effects, can be cruel. Many of them are minor nuisances that I've learned to cope with (itchy skin so I apply an antipruritic, toenails that curl at the tips so I keep them neatly trimmed, oily skin that causes body odor so I wash frequently and aggressively), but some of the side effects have had transformative effects on my quality of life.
One is damage to my gallbladder, which according to my gastroenterologist is only about 10% effective now. The doctor said that I could have the organ removed, and I might take him up on that if I have another painful gallstone, but for now I'll take 10% over 0%.
If you forgot your middle-school anatomy lessons like I did until this came up, your gallbladder's sole job is to store bile, the chemical that digests fat. Without it, fat passes through you undigested. When it's time for it to come out, that means RIGHT NOW, often with very little notice. Sometimes this is a relief because it means the end of hours of stomach cramps.
At the risk of even more "I" in what is already "TMI," I have a non-healing wound that risks re-infection every time I use the toilet. So, I need to take a shower ASAP afterwards, preferably immediately. This makes every trip to the bathroom take much longer, and given the number of trips, some days I'm in the bathroom half of the total time that I'm awake. If guests are over, I have to explain why they heard the shower running when I excused myself to the bathroom, which is never not awkward.
Bile salt pills help me digest fat by replacing the enzymes that my body cannot make any more, but I can't tolerate more than one pill at a time because it has the same dehydrating effects as a jumbo serving of salt, and just one pill doesn't make much difference anyway. Avoiding fatty food helps too, but that's really hard, because there are few choices: So many restaurants put meat and/or dairy into every last entree that I've been seeking out vegan-friendly restaurants lately. If I'm going to be out all day, breakfast might be a plain dry bagel because it's the only filling meal that won't make me sick later. I eat a lot of Lean Cuisine meals because none have enough fat to make me sick, and I'm on Zepbound which helps me not feel hungry just eating so little, but the eating disorder makes that a weary daily battle.
Speaking of weary, that's another frustrating side effect. My numbers are low—"all of them," says my hematologist, meaning my red blood cells, white blood cells, platelets, electrolytes, you name it—which causes anemia-like fatigue. The doctor ordered all kinds of tests to diagnose the cause without finding one, and he eventually gave up, saying that these numbers often correspond to liver damage and that's a sufficient explanation for him. I guess I don't care either whether it's related to the liver or not; I just know that it has thrown normal out the window.
The fatigue fluctuates from day to day, and there are plenty of "good days"—but when it's a bad day, I don't have the strength to walk from one side of my house to the other without stopping to rest. I've been overweight for many years, so I'm used to feeling out of shape, like how walking up one flight of stairs can leave me out of breath; but now, merely rolling over in bed can do that. I just don't have the spoons some days, and I've had to adjust to that new reality.
Like I said, it's not every day. Some days are fine and some are even good. Kelly and I recently bought Walt Disney World annual passes for the first time post-pandemic, and I've been able to walk around the parks for a half-day at a time, albeit with many stops on benches and sometimes painful muscle cramps. (That long hike back to the car at the end is the worst.) The first day back was a disaster, but I'm grateful because it taught me something: I ate almost nothing beforehand to avoid digestive problems, then happily walked around Epcot for hours without much trouble, until we visited the German buffet for lunch. All of that sausage and spätzle and schnitzel and Black Forest cake was delicious, but soon after leaving, it felt as if I was trapped in amber. By the time we walked to Japan, I was moving in slow motion. By the time we walked to Canada, I was thinking in slow motion. I tried to ask Kelly if we could sit on a bench, but all I could do was faintly point in that direction and groan, mouth agape. I can't imagine what I must have looked like. That experience, repeated a few times since while I got the hang of this, taught me that fatty meals wipe me out completely, as if my body directs all of its available energy to digestion without my gallbladder able to do its job. (Just last week, I rented an ECV to get around the World, which made a big difference in my energy level, and I'll continue to do so in future visits.)
I have some help from the doctor with the fatigue, like iron pills and vitamin injections. And when I know I'm going to be busy such as going to appointments, I can usually coordinate my eating and resting beforehand to make it likely that I'll have the energy to get through them. But I've lost count of the number of "bad days" when I've been too wiped out to get much done, when merely taking out the trash had to count as my sole accomplishment for the day because it's all that I had the strength to do. Going easy on myself in these circumstances is hard when I have limited time left and so much that I want to accomplish in that time; I simply don't have many days to waste like this.
But those aren't the only rough side effects, just some of the more obvious. I'll talk about the really insidious one next week.
This series continued with The Serpent and The Phoenix.
One Reply to The Tiger
Logical Operator
The creator of Funeratic, Scott Hardie, blogs about running this site, losing weight, and other passions including his wife Kelly, his friends, movies, gaming, and Florida. Read more »
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Denise Sawicki | August 19, 2024
Just reading this now. So sorry, Scott. Love you. Thank you for being a friend.