“Because It’s You”

Last Thursday, I didn’t feel too good. All right, I felt fricking awful. It didn’t register when I woke up, I just knew I was tired, and “off”. By noon, I was nursing a killer headache. I took some extra strength Tylenol and tried to nap, but my body doesn’t do naps, so that didn’t go anywhere. An hour later I left with my friend Chase to run a super-important and time-sensitive errand. Everything was business as usual until I felt hot and dizzy. Then I felt the “whooshing” in my ears and every single cell of my skin started to tingle. I felt wet, then hot, and my stomach lurched, and I felt the urge to make sure not to open my mouth. I knew what was happening. I also knew what was going to happen next. It was inevitable.

“Chase, when you can, take an exit or stop somewhere if you can.” A beat. “Actually, if you just want to pull over here, that might be better. I’m going to be sick.”

Chase pulled over on the side of a major highway (where we were) and in less than thirty seconds I was out the door. I squatted because moving up and down intensified my sick feelings and I didn’t want to get my jeans dirty. And then I had five minutes of Exorcist moments (I didn’t know I could still project out about three feet) and threw up. But I hadn’t had anything to eat, so it was really just bile. When I was done I wanted water and sugar, but I didn’t have either on me. I felt a little better, cooler at least, and we continued on to said errand. Five minutes before we were set to arrive, it happened again – this time at a busy city intersection. The cars around us were none too pleased that Chase parked where he did, while having his hazard lights on. And I just hated being a spectacle on the side of the road.

After the errand was over, I bought some juice from a gas station and we headed back to my house. The juice helped, but I could only take a few sips at a time. My husband, Roy, told me I needed to get some food on the way home – I needed to eat. I told him after what just happened, eating was the last thing I thought I could do. We compromised. I got food I intended to eat, opened the container and decided that there was no way I could eat this, or anything. Keeping down water was a monumental task.

On the side of the road the first time, I was freaked out as I crouched down, unloading nonexistent stomach contents onto the side of the highway. My first impulse was to tell Chase to call Roy. But I didn’t. I didn’t want to worry him, and that’s the kneejerk reaction whenever my body feels so wildly out of control. Most of the time this impulse is right – I need to get to the hospital and have emergency brain surgery. But not this time. This time it was something simple and not even a little dangerous. My blood pressure bottomed out – twice. (Though it happened two more times later on.) Everything else I was feeling was perfectly normal residual misery.

See, having been on dialysis for a year, and doing phlebotomies and other blood treatments at my local Cancer Center for a bone marrow disorder – I know what it feels like to have my blood pressure suddenly plummet. It’s the sole reason why I hated dialysis as much as I did, and why my blood treatments are such big deals. It’s such a specific sensation or really a combination of sensations – there was never a doubt in my mind what had happened, even though by the time I got home my blood pressure was riding the line of slightly low and normal.

By the time Roy got home I was seriously achy and thought my head would feel better if I put it through a wall. And I’m a pro when it comes to headaches (did I not mention all that brain surgery?). Roy freaked out and tried to make me go to the ER.

ROY: Michael, you don’t understand – you look awful.

ME: I look awful because I feel awful.

I mean that sounds perfectly logical, right? Roy wanted to call my hematologist/oncologist to get his opinion, but I pointed out they would tell me to go the hospital. I knew exactly what they’d say and why. With my complicated medical history (Osteo Genesis Imperfecta – brittle bones, Goodpasture’s Syndrome – an autoimmune disease that caused my kidneys to fail and impacted my lungs, several heart surgeries, dozens of brain surgeries, this new bone marrow disorder which made my body’s basic blood chemistry the enemy, a stomach disorder and a history of fever-induced strokes and grand mal seizures) they would be idiots to tell me anything but: Go to the ER. And my doctors are not idiots.

But I know my body. Very few things vex me. I know when it’s my heart or my shunt or my stomach or my blood pressure – I know when I need a new blood treatment before the blood work tells me I do. I’m not a medical expert, but I am the best expert when it comes to my body. I don’t go to the ER for trivial things, even if they can make me more comfortable. Roy says it takes “an act of God to get Michael to go to the ER”. And he’s kind of right… I only consider it an emergency if I am dying or very soon likely to die. Everything else – not so much.

The timing could not have been worse of course, as we were supposed to leave the very next day for a weekend out-of-state trip. We were supposed to leave at six the next morning. It was already nine that night. Roy and I kept going back in circles. By this time we also learned I had a slight fever, which just reinforced Roy and my doctor, who by this time called Roy back and said, “Take him to the emergency room – now.”

Roy and I made a deal: if I went then our trip would still happen, no matter how late we got back. Sure Roy kept trying to get out of it because he didn’t think it was smart to travel when I felt like this, but I kept insisting as soon as they gave me a bag of fluids all would be right in my world again.

We went to the ER and by this time I was so tired I just went through the motions. Intake is always fun because you can see the level of alarm in the intake nurse’s eyes as they ask about my history. First it’s “Oh wow,” and their eyes are wide. Then it’s “Oh shit,” which is usually two diagnoses later along with my surgical history. Then it’s “Shut the fuck up,” and by this point their eyes go between this glazed-over terrified look to one of annoyance and doubt because they think we’re making this stuff up, or just being greedy with weird and freaky medical problems. By the time we get to the last five years (chemo, dialysis, kidney failure, heart infections, strokes, seizures, autoimmune diseases, plasma exchanges, a stomach disorder, blood disorder, bone marrow disorder, and some other stuff) it’s the last stage of intake. “Let me go get a doctor!” And they haul ass out of there.

I don’t want to keep you in suspense so: I’m fine. I was right. It was my blood pressure due to mild dehydration. By mild dehydration that meant that while I had 140 ounces of water the past few days, the fact that that day I only had about 80 ounces, and that was not enough. No I had no alcohol, coffee or other things that help dehydrate a person. I was also stressed, and slightly sleep-deprived – in other words, just a little run down. But someone like me, with my medical stuff – that’s what happens when I get too stressed out or not enough sleep, or slack even a little on water. My body freaks the fuck out. It’s both annoying and embarrassing.

At first the ER doctor was irritated because he couldn’t figure out why I was there, and he finally asked me as much. I replied, “Because he [pointing at Roy] and my doctor made me come!” I mean, I thought this was just a waste of time, minus the fluid bag that thankfully was started right away. I hate going to hospitals because they want to chase all of my “fascinating” problems and place blame, when usually the answer is a lot less cool, and a lot more common. And if I don’t have a doctor call the ER and speak to someone in advance, it will be a heated thing where they order invasive tests to make sure my shunt or heart is okay, when I know that they are. I’ll refuse the tests and they’ll threaten AMA (Against Medical Advice, meaning insurance won’t pay anything), and I’ll tell them my patient rights are being violated, and I would like to speak to the hospital’s counsel. And then they’ll apologize, shut up and drop whatever they were doing. But do you see why I like to avoid the entire interaction in the first place?

At least this ER was nice, possibly the nicest and most efficient that I have ever been to – which – wow. And since my doctor did arrange everything and talked to the staff in advance, while they still wanted to chase stuff, they stopped after six aggressive interrogations and never ordered the tests I would have refused. That’s a win! The doctor who got frustrated at trying to determine why I was even there, hadn’t read my chart or been “briefed”. I guess after I fell asleep (they gave me something for the pain and I had had my fluids) the doctor came back and said to Roy. “I’m glad you brought him in. It could have been so many things… he is a very vulnerable adult.”

Yes, that’s me. Fucking vulnerable. I hate that, but I get it, and despite how I feel I know that medically I am exactly that. I’m someone who treats common illnesses like Ebola, because they usually end with me hospitalized for awhile, sometimes surgery.

Roy wanted me to go to the ER for something he wouldn’t even go to the doctor for: “Because it’s you.”

My doctor wanted me to go to the ER, even though I was 100% sure what it was, and something that could be treated (how quickly or efficiently is debatable, but still treated): “Because it’s you.”

And the hospital staff took extra blood, doped me out of my mind, ran different blood panels and every test they could get away with, while watching me way more closely than other patients there: “Because it’s you.”

I say it all the time, but I just wish things wouldn’t happen or be seen through the “Lens of Me”. Because when I actually need to be viewed through that lens, I know, and I speak up. Every other time, I just want to be anyone else.

-DMW