My Left Hand

My Left Hand

Submitted by Ace on May 21st, 2018 at 7:29 AM

mandatory soundtrack, support good music

I'm back to writing at unusual times (as I start this, 3:45 am) in unusual places (the basement again) about unusual things (I'm missing a non-essential internal organ!). I have no clue how to go about writing about this but it felt weird to start writing about basketball like I didn't just have a major life event so I'll attempt to start somewhere near the logical beginning.

During my first visit to my Alabama-based specialist in late February, we agreed I displayed a lot of symptoms consistent with a sick gall bladder and definitely had acid reflux problems. Both are common among ME/CFS patients. I also had a hiatal hernia discovered in a past test that could use fixing. All of these had bothered me in the past but were secondary to more pressing issues the vast majority of time and therefore went largely unaddressed. This, too, is common. I'll omit the list of others I've dealt with personally and my mother will thank me for doing so.

When I got back, the gall bladder stuff wasn't even among the high-priority health-related stuff I felt I had to address. There was the series of medication fiascos caused by pharmacies and insurance companies. I'll get on the full protocol with the correct prescriptions written out to me without relying on sample packets or filling gaps with saved-up old prescriptions sometime next week, should no further hiccups occur. (I'm not holding my breath.)  Again, I visited this doctor in late February, and had already begun much of his protocol before seeing him. It is late May. As you'll see, a lot can happen in that period of time.

After getting a couple other things squared away, including another insurance snafu that delayed this very test, I had a CCK HIDA scan on my gall bladder on March 27th, which you (and I) may better remember as the Tuesday of Final Four Week. There was a lot going on. (Like that short-lived Final Four poster, which got most of my attention that evening if Twitter is any indication.)

So I, uh, shoved my guts to the back of my mind until finding out sometime early the following week the scan revealed my gall bladder was in a gray area; sick but not urgently in need of surgery. I wanted to get my summer going as soon as I could, though, so I called my specialist—also a damn good surgeon specializing in performing these exact procedures on chronic illness patients, Roll Tide—and booked surgery for May 16th. I'd spend the 14th-19th in Tuscaloosa with my father overseeing, and accompanying me on, the entire trip.

I thought I was giving myself a reasonable amount of time to hit my Hail to the Victors deadline, already a lighter one than normal this year, and write a few outgoing player retrospectives.

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My weight has always been a bellwether for my health. I'm 5'10" on the nose. (Trust me, I've been measured a lot lately.) It's generally been between 130 to 145 pounds during my adult life. When it's up, which for me has meant 145 to 155 pounds, I'm doing well. When it's down, which for me has been as low as 115 pounds, I'm in trouble. Over the past year, I've mostly been on the doing well end of things.

For reasons beyond my understanding, my left hand has always been my easiest way to judge my weight and health. After enough years with this illness, I could pretty much tell you how my entire day would go after looking at my hand for a few seconds. One night, after I'd moved back into my parents' house for the second time since my senior year of college, I took a picture of it. I didn't quite get the compulsion but I knew I wasn't in a good place.


Taken January 13th, 2014, 8:26 pm ET, with an iPhone 4s, in my childhood bedroom.

It'd feel how it looked. In this case, it was weak and/or numb. (That's one off the list. Sorry, Mom.)

The next day I wrote a recruiting roundup and a Penn State game preview, drove to Crisler to cover an easy win, and finished the recap a tick after midnight. Nik Stauskas scored 21 points and I got unreasonably upset about a backdoor KenPom cover.

I look at that picture a lot.

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As Seth can attest, I may push deadlines a bit, but I rarely miss them, and almost never when it comes to our HTTV preview magazine, because finishing that is the unofficial start of my summer after what have lately been intense mid-August to mid-April seasons covering football and basketball. (No complaints, Mr. Beilein.)

With Seth's help, I'd already planned ahead for the surgery by cutting loose a few opponent previews for HTTV to other writers (Seth, to whom I'm indebted, included). Taking a week off writing for the site prior to leaving town felt like more than enough leeway to get six previews done. Being the procrastinator I often am, I didn't plan to write until Sunday, but a burst of unexpected productivity got me through two previews by Monday, May 7th, leaving a full week to write four on programs with which I'm much more familiar.

I'd had some mild morning nausea for the previous couple weeks, something I chalked up to stress—I broke up with my girlfriend of over a year during Final Four week, there was single-elimination basketball and hockey going on, it made sense—and adjusting to a medication regimen that now included a dose of tramadol, a relatively mild opioid that didn't always play nice with the gut-bomb of pills I take when I wake up. I felt good enough mentally and physically to set up an impromptu date for Tuesday evening, taking the usual precaution of requesting we meet at the coffee shop nearest to my place.

Within an hour of waking up the next morning, I vomited bile and some mostly disintegrated pills. I'd usually been able to ride out the wave. I weighed myself; 135 or so, not bad, not ideal. I had some discomfort in the upper right quadrant of my stomach area, where the gall bladder is located, but nothing that worried me too much. While I didn't get any writing done, I got some mandarin oranges and bread to settle in my stomach, part of an increasingly simple diet I'd taken to over the previous weeks to stay a little more comfortable. Nothing too out of the ordinary. I walked two blocks to the date, walked home six hours later—with a second date secured, I might add—and let the caffeine wear off for a few hours before going to bed content with my decision, even as I anticipated some physical blowback for the walking.

I've written one sentence for HTTV since.

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yep, still mandatory

Thankfully, Seth is a patient and understanding editor even by editor standards, so I secured an extension to join the stragglers and turned my mind to surgery prep. My parents, who both were incredible this week, took care of everything they could ahead of time: travel, hotel, a decent amount of the communication with my doctor's office, food preparation/shopping/ideas (a necessity given the esophagus procedure), and so much more. I only needed to fill out a couple pages of paperwork and make a few phone calls.

The freed-up weekend heading into the trip gave me a short-lived boost as the stress of a looming and soon-to-be-missed deadline abated. The nausea and sad diet lingered but I didn't barf again. Most any discomfort I attributed to pre-surgery stress, which felt reasonable. Despite a bumpy landing and a finicky stomach, I made it through the flight to Birmingham and drive to Tuscaloosa without incident. (Admittedly with the help of dramamine but I'd learned about BHM's turbulence-prone alignment and the small planes they take from DTW a hard way the first time around.)

The next morning, however, I vomited bile and pills again before my pre-surgery appointment. The nurse didn't say anything when my weight showed up on the scale but I've been on enough to account for shoes, a wallet, and a phone: I'd dropped below 130. I don't remember much else except the bill (large!) and a woman from anesthesia with a fine-tuned sense of which questions/answers to read out loud when my dad was also in the room.*

For my final meal before having my gall bladder removed, on my second trip to the Deep South, I ate two small pre-packaged cups of mandarin oranges.

*(Thank you, I'm sorry I don't recall your name or title. It's been a long week. This goes for almost literally everyone I encountered in Alabama. I could go on for thousands more words on how kind and exceptional all the medical professionals were at Northport Medical Center and Tuscaloosa Surgical Associates and it wouldn't be remotely adequate. I've had three vials of blood drawn by the Hand of God—I swear I wasn't even aware the needle was in my arm and I'm ALWAYS aware—and an organ removed through an opening the size of a fingernail clipping.)

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Taken May 21st, 2018, 4:12 am ET, with an iPhone 7 Plus, in my weird basement.

I went into surgery around 6:30 am CT the following day. Vague memories linger of tweeting a selfie with two words that took a very long time to spell correctly—my dad misinterpreted this as impressive typing speed—and my surgeon saying it was good we got it out when we did before informing me that smoking medical marijuana when I returned to a state where that's legal wouldn't harm my esophagus. I'm glad I had the presence of addled mind to ask that question, because my reaction to opiates is to shut down all digestive function and sweat everything out while I'm trying to sleep, which isn't very conducive to rest.

I'm now (kinda) resting, quite comfortably, at my place. My shoulders are sore, a weird quirk of the gall bladder surgery, and I'm a bit gassy, a product of my esophagus being pumped with air, but those concerns are nothing compared to those of last week; even the prospect of 2.5 more weeks on soft foods only (no meat, no bread, no carbonation for an extra two weeks) hasn't put me out. This sad diet hasn't even kept me from putting weight on. My mom is cooking up some not-sad ravioli that'll work with my current limitations. My dad is hopefully getting some hard-earned days away from stress. My brother is there if I need anything. I’ve gone 23.5 hours without ingesting an opiate and I don’t plan to turn back. My left hand feels, and looks, stronger.

It's time to knock out some previews.

CFS/ME Fundraiser Update: Tattoo Designs, Please

CFS/ME Fundraiser Update: Tattoo Designs, Please

Submitted by Ace on January 16th, 2018 at 3:57 PM


not getting this inked on my body but it's how I feel about the fundraiser [Campredon]

I should never underestimate the money cannon.

It's been five days since the post announcing the CFS/ME fundraiser went up. In that time, over 500 donors have raised over $30,000 dollars, and I'm honestly running out of words to describe how incredible it's been to see this. We've hit every stretch goal, including the tattoo, and I'm left scrambling to figure out what to do next, because I very much want to keep this going—it hasn't even been a week and this is just starting to spread to new corners. (On that note, a hearty fist bump to Eleven Warriors. Y'all got me to say Go Bucks and I'm not even mad.)

I'm learning to not apologize for doing this: here's the widget again. We're kicking around some cool ideas for ways to keep this conversation going. In the meantime, many of you have asked about what you can do to help, and my answer is this: share this far and wide, along with the documentary that inspired it, Unrest, which is now on Netflix.

Happy 33rd Anniversary, Mom & Dad. Let's Find A Cure For CFS. on Crowdrise

I'm going to post the details of the tattoo design contest. First, however, I want to discuss a couple things that have come to mind during this past week; this is an incredibly important time for CFS/ME awareness and I don't want to miss the opportunity to hopefully help educate while it's at the forefront of a lot of people's minds.

[More CFS/ME discussion and TATTOO DESIGN CONTEST DETAILS after THE JUMP.]