I Don’t Trust Uncertainty: Chronic Illness, Control, and an ER Visit

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I had a craving for a latte when I passed the new bougie espresso cafe in a neighboring town. Along with the craving came a sudden urge to pee. I ordered my decaf almond milk, sugar-free hazelnut latte, and headed toward the restroom in the back. I washed my hands at a gleaming Italian marble sink and lifted the seat on an ultra fancy European toilet. LED spotlights aimed straight into the bowl. There was no chance of missing anything. I started to pee and gave an audible gasp. The white porcelain showed everything with style. Blood. I was peeing blood. Welcome to a body rebels. I'm Tate. This podcast shares my personal experiences and is not medical advice. Please speak with your own provider before making medical decisions. The voice you're hearing is AI because illness makes speaking difficult, but the writing, memories, opinions, and experiences are mine. In this episode, I'm talking about my Labor Day weekend ER visit and what the way I handled it showed me about chronic illness, preparation, and my need for control. First, a little housekeeping. This is the official 100th episode of A Body Rebels, a chronic illness podcast. And episode one of season five. I want to stay with the number 100 for a moment because I almost rushed right past it. 100 episodes. When I started this podcast, I had no idea where it would go or how long I would keep doing it. Since then, I have written and recorded through fatigue, shortness of breath, medication changes, good stretches, bad stretches, and periods when my body made the decision for me and I had to step away. There have been episodes when speaking for long periods was beyond me, which is why an AI voice now carries words I still write myself. There have been times when I said I needed a break and meant it. In fact, my last episode was one of them. And now I am sitting here opening season five with episode 100. I don't see 100 episodes as proof I beat chronic illness. Look at the subject of today's episode. My body is still quite capable of throwing a new problem at me without checking my schedule first. For me, 100 means I kept finding something worth saying. I kept writing when speaking became harder. I kept telling the truth about what living in this body looks like, including the parts where I am scared, angry, exhausted, stubborn, funny, wrong, or still figuring myself out. And people kept listening. Some of you have been here for a long time. Some of you found the podcast last week. Either way, you gave these episodes part of your time. I don't take that lightly. So before I start telling you about blood in a toilet bowl, I wanted to mark the moment properly. 100 episodes. Thank you for getting me here. Now, on to the show. On the Saturday of Labor Day weekend, right after my last episode where I said I was taking a break, I began peeing blood. My body heard taking a break and apparently had other plans. At first, the urine looked pinkish. I gathered myself, walked back to the car, called my wife, and told her what was happening. I wanted possibilities. So the researcher and me kicked in on possible causes. Blood thinners? Check. I take eloquist twice a day. Trauma? Check. The night before I was sitting on the floor with my pups. Both came flying out of the kitchen, through the dining room, and into the living room while chasing each other at full speed. Both used my groin as a parkour springboard, one after the other. Trauma went on the list. Heavy lifting? Check. A new washer and dryer had arrived, and a couple of cabinets needed to move out of the way, then back again. Medication related? Check. Methotrexate was on my mind. I had recently started the drug, and my kidney function was already being monitored as part of my treatment. Kidney stone?

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Hmm.

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Earlier scans showed a stone sitting in my right kidney. The stone had been there for years, hanging out and doing nothing. No rent, no trouble. Was Labor Day weekend finally move out day? The lack of pain bothered my theory. My urine flow was normal. No burning, no other obvious urinary symptom. Only blood. Then cancer appeared in the search results. Because cancer seems to find its way into almost every symptom search eventually. Within a short time, I had taken one alarming sight in a toilet bowl and turned it into categories. Possible cause. Evidence for it. Evidence against it. Next possibility. Next possibility. Next possibility. I didn't know why I was bleeding. But I had organized the unknown. That matters to me. My first plan was to wait until Tuesday, call my doctors, and hear what they thought. Then the facts changed. A little after nine that night, there was more blood. So I changed the plan. My wife suggested urgent care. By then the local urgent care centers were closed. Next option. Emergency room. My wife wanted to drive me. I said no. That wasn't me trying to be tough or prove I could handle everything myself. I had no pain, my urine flow was normal, I was alert, steady, and able to drive. The problem was the blood. I also knew what an ER visit on a Saturday night might look like. I pictured hours of waiting, blood work, urine testing, imaging, and then being sent home. I didn't see the point of my wife sitting beside me for all of that if I was capable of getting myself there and back. If I had felt unable to drive, I would not have driven. But in that moment, I felt capable. And the practical choice was obvious to me. So I drove myself. The people in the ER seemed surprised. They didn't know me. During COVID, I drove myself to the emergency room with a collapsed lung. Now a new ER visit for blood in my urine. I arrived at exactly 10 o'clock. The waiting room was empty. Earlier in the evening, according to the staff, the department had been slammed. By 10, everyone looked tired. Even there, I have a system. I'm pleasant with medical staff. I say hello. I joke when the moment suits a joke. I treat people with respect. The work is hard. The hours are long. Everyone walking through those doors arrives with a problem. I don't want to become another problem. Fake pleasantries don't interest me. People read through those quickly. I mean genuine respect. I've watched an exhausted face change once someone realizes I'm speaking to them as another human being. Then comes the medical part. I know my conditions. I know my medications. I know my history. I know the terminology connected to my own body. When I had my two lung collapses, I didn't walk into the ER and say, my pulmonologist found some kind of lung thing. I said, I was at my pulmonologist's office for shortness of breath. Imaging showed a left apical pneumothorax. I have cardiopulmonary sarcoidosis. Useful information immediately. I have lived with sarcoidosis for 20 years, and I've learned how much time gets lost when important medical information comes out in pieces. So I don't bring pieces. On my iPhone, I keep a current medication list. Medication name? DOS. Frequency. Reason for taking it. The reason matters. I have heart failure, and several medications used in my treatment are also commonly recognized as blood pressure medications. During an earlier hospitalization, staff hesitated over giving me some of those medications because they were looking at them through a blood pressure lens. I knew why my heart failure specialist had prescribed them. I asked for the physician and pharmacist to review the situation and contact my heart failure specialist. The medications were given. My phone also contains medications I previously took, and the reasons important ones were stopped. The information helped when someone later suggested a drug I had already taken and had an adverse reaction to. I keep another note with major doctor visits, dates, tests, medication changes, and plans. So by the time the ER doctor came to see me on this latest visit, I wasn't trying to reconstruct 20 years from memory. I handed her the important parts in minutes. I told her, I have a patent for Raymond Oval, a PFO. The closure was done in 2007, and I still have a residual shunt. I take eloquist because of my stroke risk. At one point she asked whether I had medical training. I said, I'm an expert on my own conditions. I meant it. I don't claim expertise in medicine. I know my body, my diagnoses, my medications, and my history. If I describe pain, I try to locate it precisely. Surface or deep, sharp or dull, constant or intermittent. What changes it? I do all of this because an emergency room gives me plenty I do not control. I don't control who is working. I don't control how busy the department is. I don't control which tests get ordered. I don't control what the CT scan shows. And on this particular night, I didn't control the blood appearing in the toilet. So I took control of everything available to me. I researched the symptoms. I sorted the possible causes. I changed my plan when the bleeding increased. I chose how I would get to the hospital. I arrived with my medications organized. I had my history ready. I used precise language. I anticipated questions before they were asked. And once I looked at the whole night from a distance, I recognized myself. This is how I approach almost everything. The ER visit didn't create the pattern. The ER visit exposed it. There is another part of this pattern people around me rarely see. By the time I give an answer, I have usually spent far more time thinking about it than anyone knows. I have researched. I have second guessed myself. I have run through what might go wrong. I have considered other options, rejected some, gone back to them, and sometimes started over. Most of that happens privately. Then I finally reach a decision and say, This is what I think we should do. The person hearing me gets the finished answer. They don't see everything behind it. So I often sound far more certain than I felt while getting there. People see the conclusion. They don't see the doubt, research, checking, and rechecking that produced it. The ER visit was a perfect example. By the time I walked through those doors, I already had possible causes in my head. I considered whether I should wait until Tuesday. I changed the plan when the bleeding increased. I decided where to go, how to get there, what information the doctor would need, and how to explain my history. From the outside, I looked calm and decisive. Inside my head, I had already worked through a pile of possibilities before anyone in the ER asked the first medical question. In medicine, this pattern often serves me well. My body has surprised me enough times to make preparation sensible. Shortness of breath has meant a collapsed lung. Medication changes have mattered. A small symptom has sometimes belonged to a much larger medical story. The problem is my brain has no sign on the door saying, medical emergencies only. I bring the same approach home. If I buy an appliance, I want the specifications, dimensions, differences between models, possible problems, and what happens years from now. If someone repairs something, I'm already thinking about the season changing, something shifting, something wearing out, or some detail becoming a problem later. If I give someone a task, I have a bad habit of giving them the outcome and then continuing. How I would do it. What I would watch for. Where I think trouble might appear. What I would do if it does. To me, I'm preventing problems. To the person listening, I'm telling them how to do their job. That is where my medical survival skills starts costing me. At work, handing over a task doesn't help much if I keep carrying the entire task in my head. In relationships, people hear another question, another correction, another instruction. Eventually, whatever you think takes less energy than explaining a different opinion. With money, I sometimes keep researching long after I have enough information to make a sound decision. The final few details cost time and mental energy, even when they don't change the choice. And I understand why people sometimes read the behavior as distrust. They don't see the hours before the answer. They don't hear me questioning myself. They don't see all the possibilities I considered before I arrived at what sounds like a firm opinion. They hear the answer after the uncertainty has already been worked through in my head. So from their side, I look certain, sometimes overly certain. From my side, I already had the argument with myself. The ER visit helped me see the difference. When I was sitting there with blood in my urine and no diagnosis, organizing everything gave me something useful to do. Accurate information mattered. My medication history mattered. The details mattered. If somebody is moving a cabinet in my house, the same level of control does not belong there. So I'm trying one small change. Before I explain how something should be done, I ask myself whether I care about the method or the results. If the result is what matters, I give the result and the one requirement I care about. Then I stopped talking. Back in the emergency room, the staff drew blood, tested my urine, and sent me for a CT scan. The tests narrowed my list, but none of them gave me the answer I wanted. My kidney stone was still sitting in the same place. The CT scan did not explain the bleeding. Neither did the blood work or urine testing. So the search did not end when I walked out of the ER. The next step is a systoscopy in October. During the systoscopy, the urologist will pass a small scope through my urethra and look directly inside my bladder. At that point, the next branch in the road becomes much clearer. If there is a visible source for the blood, such as inflammation, irritation, an abnormal growth, a bleeding area, or another problem inside the urethra or bladder, they should be able to see it and decide what needs to happen next. If the bladder and urethra look normal, that answers a different question. It means the cystoscopy did not find a visible source of the bleeding there. Then my urologist has to decide whether the episode was related to something already known, whether another part of the urinary tract needs more attention, or whether we watch and see if the bleeding happens again. So October will not necessarily hand me a diagnosis. But I should leave knowing something concrete that I do not know today. Either they found something inside the bladder or urethra that helps explain the blood. Or they looked directly and did not. For a brain like mine, that distinction matters. Right now, I still have a box labeled unknown. The cystoscopy should make that box smaller. I'm Tate. Thanks for sharing this time with me. Until next time, take care of yourself. Keep breathing, and remember, sarcoidosis is only rare until you're the one living with it.