Writing, Summer From Hell
I’ve written a tremendous amount in my WordPress (the Internet software that powers my blog) over the past year, but I’ve only posted a tiny fraction of it. What always seems to happen is that I start writing about an important current event, but I don’t quite finish those entries. I have every intent to finish them, but by the time I get back to them, they don’t seem nearly as important to me as what’s going on more currently (currentlier?). There’s always something more current and more important-seeming that I start writing about and don’t quite finish. I’m going to do my best to write shorter blogs so this doesn’t keep happening.
This has been a bad year for me. It started with lots of fruitless investigation into my tactile hallucinations. Even in the nation’s supposed best medical center, the Mayo Clinic, no one had any answers for me. I have a small, unfinished entry about the Mayo Clinic that I’ll post eventually.
Before that though, I’d like to write about this past summer. It’s been awful, and not because of my weird hallucinations, but because of bad doctors and bad practices. And an unexpected death in the family.
1) I finally narrowed down my rolodex of doctors to a number I could count on one hand, which was a great feeling. I knew all my doctors well and I trusted them. I had one gap in my treatment, though, which was a primary care physician (PCP), to both take care of me when I randomly became ill and to be the quarterback who kept my other doctors on the same page in treating me. Lo-and-behold, one of my trusted doctors had a great PCP, who she insisted would be great for me.
2) I took her advice and made an appointment with her PCP, and I loved him. I felt he immediately understood my weird circumstances and saw he was very excited to coordinate with all my other doctors about how to go about trying to take on my hallucinations. I also found out that he was an addiction specialist. I told him about my trials and tribulations with Methadone.
2.a) I’d been put on 200mg a day of Methadone to treat my pain during my hospital stay at the beginning of chemo in early 2008. In 2009, still on chemo, I weaned down to 10mg a day over ten months, but I suffered massive withdrawal when I tried to wean from 10mg to 7.5mg a day. I was told I couldn’t go through withdrawal during chemo because it was too much strain on my already weak system, so I had to wait until after chemo to get down to 7.5mg.
With no help from the pain management clinic I was seeing at the time (they were supposed
3) For three years after chemo, no one wanted to help me off that last little bit of Methadone. And all of a sudden, here was a guy I really liked who was willing to help me get off this medication completely. It's not even really that Methadone has a stigma to it (it's often used to help heroin patients beat their addiction), it prevented me from taking a wide array of non-opioid drugs, like migraine medications. I never wanted to be on opioids in the first place, so the idea of getting off Methadone and being able to find non-opioid pain drugs has been massively appealing since I was first put on it.
4) My new PCP seemed as excited about getting me off Methadone as I did. Although his is a family practice, one of the first things I realize in retrospect was that his plan was for addicts, even though he insisted over and over that I wasn't an addict. He explained that I was never addicted to Methadone–meaning I never took it in a way that wasn’t ordered by a doctor. I followed my doctors’ instructions by taking it to a T and never abused it. I was dependent on Methadone, though, which means that I did everything right by following all the right directions, but my stupid brain still thought it needed it–even though I had no desire to keep taking it.
4.a) Brains are majestic in what they can do and the amount we don’t understand why they do what they do. But they’re also stupid and gullible in lots of ways.
5) Instead of weaning me off the Methadone, my PCP took me off of it cold turkey and put me on OxyCodone. He did this to fool my brain into thinking it was still receiving Methadone. I was then, after two weeks, to go cold turkey on all opioids (which would just be OxyCodone) for a weekend, and then I’d be switched to another medication for six months, called Suboxone, that would help me get through any and all withdrawal.
6) For the first few days after my switch to OxyCodone, my doctor called and adjusted the amount I was taking. He did a lot to make sure I was comfortable, and this made me feel confident that I was in good hands. Then the calls stopped. And I ceased feeling comfortable.
7) I called his office and found out that he was out of town for four weeks. This was a total surprise to me, and I had no idea what to do. His practice has no other doctors, though it does have one physician’s assistant (PA).
8) Their system of communication is also very odd. Everything, from emergent questions to prescriptions went through the receptionist and she decided if they were worthy of sending on to someone else. I understand that when you’re managing a large number of drug addicts, a doctor probably needs a firewall, someone to make sure the calls legitimately need to come through. This non-medically trained receptionist is just not the right person to do that.
9) I got a message through to the PA about my pain and discomfort. She prescribed a medication to help me.
10) The pharmacist called a short time later and said that the medication I’d been prescribed could kill me.
11) We got notice back to the receptionist, who let our message through to the PA, who prescribed a different medication.
12) The pharmacist called again and said that the new medication would KILL ME EVEN WORSE (or probably something like, “it could be even more deadly,” but I like my way of saying it better). The pharmacist could not get through the firewall to talk to the PA about these deadly meds she was prescribing to me.
13) Between the bad prescriptions, the receptionist not letting the pharmacist talk to the PA, and my doctor being out of town for four weeks, it became apparent no one was really running the show. No one was managing my comfort, yeah, but much worse, no one was going to get me off the OxyCodone in two weeks as had been planned.
14) We turned to the doctor that had recommended my new PCP, who had his personal phone number. We were able to get in touch with him. He was out of the country for four weeks, but said he could coordinate from there.
15) Through various emails that were exchanged, it became clear that he could do some things from afar, but not nearly enough.
16) Unrelated to the medical situation, my grandma passed away very unexpectedly during this debacle. It’s still sad and tragic for my entire family. She was an amazing woman. It was hard managing my health and her loss at the same time. She deserves her own entry so I’ll wait to write more about her until it’s just about her. Suffice it to say, I miss my grandma a lot.
17) When my PCP finally got back to town, I had been on OxyCodone for five weeks.
18) OxyCodone is much more addictive than Methadone.
19) As if no weird trip out of town without telling anyone had happened, my doctor ordered me to go off OxyCodone the weekend after he returned.
20) The problem was that I had become very dependent on OxyCodone over five weeks and my stupid brain really didn’t want me to go off all opioids cold turkey. I think my brain may have also noticed that it had been tricked about that whole going off the Methadone thing around this time, so it was pretty angry with me.
21) I did it. I went off the OxyCodone. My brain immediately made my body go haywire. My pulse dropped radically, down to a level that I couldn’t take any of my anti-tactile hallucination medications. When I tried to sleep (the time my tactile hallucinations come on), my hallucinations had changed into something absolutely terrifying. They’d been bad before, but nothing like this.
22) The hallucinations involved my entire body being converted to spiky metal micro-structures. There were metal spiders sewing layers of small, painful metal objects to every inch of my skin. They were also weaving different parts of my body together. Keep in mind, these are tactile hallucinations, so I can’t see or hear them, I can just feel them. There was no way to brush them off or to stop them. They just kept building metal structures all over me, piercing my skin, and sewing tender parts of my body together. It was the most pain my brain had ever put me through–my body was racked with unbelievable pain even though the pain was an illusion created in my brain.
23) The tactile hallucinations stopped being restricted to when I was laying bed. They were happening whenever and wherever I was, no matter the position.
24) I couldn’t sleep during this at all. It was more than miserable. It was torture. It lasted three nights and by the third night, I wasn’t sure that I was going to survive. It was a terrible feeling in the pit of my stomach and something I didn’t want to think about, but couldn’t get out of my head. Sleep deprivation and torture, even if they were coming from my own brain, put me on the razor’s edge.
25) My parents switched turns staying up with me. They had to switch because I caused whoever was with me massive sleep deprivation. There wasn’t anything I could really do other than holler and whimper. I have no clue what I’d have done without them.
26) On the third day, after three nights of hell, which was a Monday, my pulse was a steady 40. This is called bradycardia for people that aren’t very fit athletes, and it’s very dangerous for anyone who’s not a very fit athlete.
27) My PCP wouldn’t put me on the new medication, Suboxone, that was supposed to help me with withdrawal unless my pulse was holding steady above 70. I also couldn’t take my hallucination medications under these circumstances. My PCP told me to go to the ED (ER).
28) The hospital played with my liquids and found that pumping me full of them made my pulse go up. They gave me some of my hallucination medication (since my hallucinations felt like they were all over me even in the hospital), which made my pulse drop again. They finally got it figured out, though I’m not really sure how.
29) By the time I was leaving the hospital, my PCP had left his office for the day.
30) Another night of hallucinations, however, my pulse went up high enough at one point that I could take one of my meds. I fell asleep, even as metal spiders were crawling all over me and I got five hours of sleep. It was the sweetest five hours of sleep I’ve ever had.
31) The next day, we went into the PCP’s office at 7:45 AM so we could get me on the Suboxone. A lot of stupid stuff happened. They asked where my Suboxone was, as I was apparently supposed to bring it with me, despite never being told to do so. In fact, I didn’t even have a prescription for the stuff. When my normal pharmacy said they didn’t have enough to fill the order, we called around to other pharmacies until we found one that could fill the whole order.
32) It turns out Suboxone is very expensive without insurance and that insurance needed prior authorization to pay for the drug. We were told to just buy some out of pocket and the office would get the prior authorization taken care of. Paying out of pocket even for a few doses was extremely expensive. And, for whatever reason, the receptionist took four days to even initiate the prior authorization request.
33) By that time, I needed more, so we just bought it.
34) My PCP once again started making contact every day, adjusting the amount of Suboxone I was taking, with the goal of getting me to a place of feeling like I hadn’t gone cold turkey on OxyCodone.
35) I felt very sick to my stomach taking the Suboxone. With a little research, my mom found that the Suboxone I’d been prescribed contained a second, inactive drug called naloxone. Naloxone is known for causing stomach aches, though that’s not it’s main purpose. It’s main purpose is to keep patients who are taking Suboxone from getting high on heroin.
36) I guess it worked, because I didn’t get high on heroin. The proof is in the pudding, even if I didn’t taste any of the pudding.
37) We talked to my PCP about the naloxone. This is where I realized I was being treated as an addict and not a dependent. I had no need for naloxone, as I never did or sought to do heroin. He very reluctantly prescribed a version of Suboxone without naloxone in it.
38) We went through the insurance pre-approval baloney again. The receptionist asked why we’d need it, as if there hadn’t been a problem with it before. Again, we ended up buying the expensive drug out of pocket.
39) Communication stopped. I heard nothing from my PCP for three weeks.
40) Between all this (1-39… I wrote more than I meant to), I decided to switch to a different doctor.
41) This new doctor was recommended by another of my trusted handful of doctors. This new doctor is not a PCP; he deals exclusively with addiction. It took some convincing, but he eventually came around to understanding that I did not want to go back on either Methadone or OxyCodone.
42) The new doctor immediately started weaning me off Suboxone.
43) It turns out Suboxone is an opioid that’s more addictive than OxyCodone. And my PCP was going to have me on it for six months. You can’t see it, but I’m throwing my arms up in total confusion right now. You’ll just have to trust me.
44) The new doctor and I worked out a wean schedule for the Suboxone. It was supposed to be done by the end of August, though the symptoms would likely last through mid-September. This was fine with me, because I just wanted off all these damn opioids and I just wanted to be done with the main focus of my summer being weaning off difficult-to-wean-off-of medications. It was also nice to have an actual deadline for something–the last time I had one of those was my countdown to being off chemo.
45) Everything was going fine, the schedule was working fine, until one night after I’d gone down a dose and I started having audio hallucinations. I was hearing voices in my bedroom. It was freaky.
46) My new doctor told me to go back up a dose on the Suboxone and that we were going to slow the wean down. Although this destroyed my deadline, I’m ultimately happier not hearing voices in my room at night.
47) That being said, I’m still experiencing lots of withdrawal effects and most days I simply do not feel well at all. No audio hallucinations, but a load of other bad feelings. I feel like I’ve had my summer stolen by negligence and “professionals” that just don’t care.
48) We’ll be playing the wean by ear from now on. If I feel I can go down, I will. But it’s going to be slower. I have a feeling it will last through much of September.
49) I wrote way more than I wanted to, but it’s good to have gotten this all off my chest.
Shorter next time, for sure,
Happy Birthday, Vik.
Tuesday April 01st 2014, 11:59 pm
Filed under: Family
Victoria, this has hung on the refrigerator in our basement since you drew it and gave it to my mom, your Aunt Laure. I don’t know if it’s a very fair representation of all you achieved in your short life, but I see it every day and remember the first time I met you. You were a little cutie and a tiny goofball. I think about you and miss you every single day. You would have been 22-years-old today. It’s been almost a year since the world’s been robbed of your beautiful smile. I love you and I’m sorry you weren’t here to celebrate with us.
Return To The Cosmos… And To Science.
34 years after his hero Carl Sagan first gave the world “Cosmos,” Neil deGrasse Tyson, the director of New York City’s Hayden Planetarium, hosted the first episode of a new “Cosmos” series tonight. It was fantastic.
When I was younger, I had a huge passion for science. This passion was spurred on by shows like “3-2-1 Contact,” “Bill Nye the Science Guy,” and countless reruns of Carl Sagan’s original “Cosmos: A Personal Voyage.” Although the original “Cosmos” series from 1980 was made up of only 13 episodes, they felt like new adventures every time I watched them.
Sagan didn’t just make science unbelievably interesting to me in an easy-to-understand way, he showed why science was such an easy subject to embrace and love. It’s the story of us all, of all that has ever existed, and of all that will ever exist. “We are all made of star-stuff,” as he famously said.
Although the world tragically lost Carl Sagan in 1996, his work lives on. With the invention of YouTube, I watched many of his old television specials in college. Even without the assistance of drugs, I found what he taught to be mind-blowing, just as “Cosmos” had been. I even read a few of the scores of books he wrote and/or edited. Dr. Sagan made science so obvious and so wonderfully magnificent at the same time.
Unfortunately, by the time I was in college, I had been discouraged from being anything more than an amateur scientific observer due to two very specific issues. First, I posses scientifically-proven terrible mathematical genes, a trait shared by the genes of everyone in my family. I probably could have overcome those faulty genes and learned not to fearhate math if not for the second issue. Beginning in the eighth grade, I had an unending series of science teachers and professors who could be ranked from “less-than-inspiring” to “downright-unhappy-with-having-to-teach-science-and-eager-to-take-it-out-on-their-students.”
By the middle of high school, I held little interest in a professional life in the field of one of my greatest passions. By that time, I had enough other things to be passionate about that it didn’t bother me. I went to college in New York City and studied acting and writing and continued with another of my longtime passions, comedy. I even took a class called “The Philosophy of Science” to satisfy one of my science credit requirements without having to do anything too sciencey. And especially not mathy in any way, whatsoever.
In my defense, I did date a wonderful, brilliant scientist for many years. But I also vividly remember being in a pharmacy with her, carrying her biology book, the cashier looking at both of us and, apropos of nothing, correctly stating that she was clearly the scientist. My mouth wasn’t even unconsciously pouring goofy nonsense out at the time. It was just that obvious.
I’d left science behind, though not my curious mind. During my time in New York City, both during college and after it, The Hayden Planetarium at the American Museum of Natural history was one of my favorite places to visit. It’s a giant sphere, at the center of which, sits another very large sphere. Throughout the giant, spherical planetarium are dozens of decorated spheres of all different sizes in an exhibit called the “Size Scales of the Universe.” (That’s site’s not all that exciting, but there’s a picture of the inside of the planetarium and some size scale examples, so you have some idea what the hell I’m talking about.)
Each of the smaller spheres represents the size of something when compared to the sphere at the center of the planetarium. For instance, there are models of all the planets in our solar system hanging around the center sphere, to size scale as if the center sphere were the size of the Sun. There are also spheres that represent how big the different parts of atoms would be if the big center sphere were a proton.
Actually, there’s a similar sort of exhibit on the web that you can take a look at to kind of sort of get an idea of what’s in The Hayden Planetarium, The Scale of the Universe, created by Cary Huang. It’s great, but don’t use it as an excuse not to visit the planetarium in all it’s three-dimensional, gigantic, spherical glory. Seriously, I’ll know.
I never cease to be amazed at how the Size Scales of the Universe exhibit made it so easy for me to suddenly comprehend the most massive of size relationships between so many things in our universe, from the very largest macroscopic galaxies to the tiniest microscopic parts of the cells in our bodies. Standing in that room always seems both so obvious and so wonderfully magnificent at the same time. When I’m in there, I’m always reminded of my youthful passion for science and the people that made it so obvious and so wonderfully magnificent, people like Carl Sagan.
I first became aware of Neil deGrasse Tyson not from my many visits to the planetarium of which he is the director, but rather through that other passion of mine I mentioned, comedy. Tyson has appeared numerous times over the years on “The Daily Show with Jon Stewart,” and its sister show “The Colbert Report.” I won’t explain what those are, because you should just know. I try never to miss either show, but if there are ever times when I go to extreme lengths not to miss an episode, it’s when Tyson is the guest.
He’s funny and personable and, over the past 15-or-so years, like Bill Nye, he has been an advocate for the absolute necessity of Americans to renew their interest in science. Both on a “wow, that’s neat!” way and a governmental “we’ll put money into this!” way. Every time he appears on one of these shows, I find what he had to say about science absolutely fascinating. I’ve always thought his advocacy for a renewed focus on science in America is extremely important. Science has been getting trampled on in this country for at least half of my life, which I find extremely offensive and, quite honestly, just plain bizarre. How could you not “believe in” science? That’s not even how it works.
I even bumped into Dr. Tyson a few times in New York. I think the longest conversation we ever had was, “Hey, I’m a huge fan of your work!” and him running away yelling, “Thanks! I don’t just do ‘The Daily Show!’” I knew that by the time of that run-in, but I’m sure he got that all the time. I also ran into him once when I had grown a large, gnarly beard for the part I was playing in “Hamlet” (Old Hamlet [The Force ghost of Hamlet's murdered father, played by James Earl Jones in "The Lion King"]). It was also the middle of the winter and I was wearing a long trenchcoat. I attribute the large beard, the trenchcoat, and my over all largeness to him not making eye contact with me and quickly ushering his children inside the nearest building very quickly.
Even though I felt terrible today, physically, mentally, and emotionally, and even though I spent most of the day in bed, there was no chance I was going to miss the premiere of the all-new “Cosmos.” This premiere of this sequel to Carl Sagan’s original “Cosmos: A Personal Voyage,” subtitled “A Spacetime Odyssey,” had been on my schedule ever since I read an article about Seth MacFarlane producing it all the way back in some previous year like 2011 or maybe even 2010 (it feels like a few years ago). As soon as commercials for the new show started airing, my parents and I agreed we were all going to watch it together, no matter what.
As I watched, I found myself elated and literally (yes, literally) jumping out of my seat in excitement. I couldn’t stop saying “I’m loving this!” throughout the broadcast, nor could my parents. We only quieted down for fear we’d miss something. Lo-and-behold, this new “Cosmos” hosted by Neil deGrasse Tyson, has reignited a passion for science that I’ve not felt in many years. The chances are almost infinitesimally low that it’ll change my mind and convince me to ever become a professional scientist, but I definitely have a warm place in my heart for science that–while never having gone away–was inflamed tonight.
Dr. Tyson made science seem so obvious and so wonderfully magnificent at the same time. I think Dr. Sagan would be proud.
I can’t wait to keep watching it every week. I highly recommend it. And science. Thank you, Seth MacFarlane, Neil deGrasse Tyson, and all the other people involved in creating this brilliant, new, exciting, educational, network television show.
P.S. And, I guess if you can do it, math is probably not bad to learn as a helpful tool to use for a greater understanding of science. But I wouldn’t know anything about that.
Not Yet Entirely Crazy, Yet Edging Ever Closer.
Despite making some new agreeable plans yesterday about moving forward in a way that would hopefully make my life more livable, today I experienced two of the worst hallucinations I’ve ever had.
This has been going on since late June/early July. That’s eight months. 3/4 of a year. I wrote in this blog that 2013 was “the least productive year of my life.” That needs to be modified to read “2013 was the least productive calendar year of my life.” All things considered, if the calendar started in July, this realigned pseudo-year is even less productive than 2013. I’m tired of not being able to do what I want to do from the smallest of things to things that actually matter. Like reclaiming any scraps of the life cancer stole from me. I’m tired of all these goddam mountains that keep popping up out of nowhere, blocking my path to recovery. No more mountains, no more climbing, no more recovery. I want it all gone.
I’ve written a blog entry about the Mayo Clinic and Minnesota that I can’t seem to finish because it keeps bumming me out even more than I’m already bummed out. “Bummed out” is my just my easy way of writing “massively depressed” because it doesn’t depress me as much to type out. My plan was to finish that entry and finally get it posted this weekend. Jokes and funny pictures and all the juicy details. Now, because of several bad rounds of sleep and the hallucinations today, I’m even more exhausted than normal, and I don’t want to get near my bed or even think about hallucinations.
On top of that, I’m sick. Although, being sick’s way easier to deal with; I’ve been dealing with being sick forever. That’s my life, and I guess can deal with a life of daisy-chained-illnesses if I have to. Should I have to? Is it fair? Probably not. Is anything fair? What a weird concept we hang onto until we’re told it doesn’t apply to anything in real life.
I think I can deal with being sick more in my life than most other people have to, if that’s how it has to be. I don’t want to, not at all, but I think I can do it if that’s what my life it going to be. But the hallucinations are something else altogether. I can’t write about ‘em, I can’t think about ‘em, and I genuinely worry they’re slowly driving me crazy. I need them gone for good.
I wrote this the other night but kept it to myself. But if you know of anyone that’s interested, let me know:
Great news, friend(s)! I’ve officially decided that my life is far too complicated for me and I’m giving it up. This might just be your lucky day! Where one person finds too much complication, you might find just the right amount! If you’re the kind of person that’s always looking to solve more complex life problems than you can find in your own life, well this is just the life for you! Please only apply to life swap with me if your life makes complete and total sense and has absolutely no outstanding quirks, oddities, or unanswered questions. Nothing weird in your past I’m going to find out about in twenty years, either. That’s totally uncool. At this point, I’m looking for a life in the range of Uneventful- to Boring+.
I’m depressed and really don’t want to post a blog with this tone. But it’s how I’m feeling right now.
At least I added a previously-written-joke. That’s somethin’.
Writing, Tweeting, Losing Sports Championships. Plus! Special Bonus: Is Being A Dictator All It’s Cracked Up To Be?
I’ve been wanting to write a lot lately, but I have a pinched nerve in my neck. It’s referring pain down to my thumb and forefinger, through the ol’ carpal tunnel, which I believe Chris Christie conspired to close at some point recently, for all but two tendons. In lieu of writing, I tried dictating to Siri, but that just didn’t feel like writing. Because it wasn’t. It was dictating. If there’s one thing I know for certain about my skill set, it’s that I’m a much better writer than dictator (to which the good people of Sincostan can attest).
Then I figured out I could just mash at my iPad screen for an experience similar enough to writing, but without the pain of actually typing. So here I am mashing away! mashmashmash!
Last night, the Broncos were crushed by the Seattle Seahawks in the Super Bowl. As a Denver native, I am obviously a sad fan. I’ve been tweeting about it:
1) As a #Broncos fan, I feel just like Mitt Romney on Election Night. Winning: inevitable. Losing: ha ha! impossible! We’re fools, Mitt. Fools.
2) Hard watching #Broncos blow championship in a night, but way easier than watching #Rockies take four to do the same. Plus that was baseball.
To understand that second one, you need to know, first, that yes, Colorado has a Major League Baseball team (the Colorado Rockies) and that, second, yes, they somehow bungled their way into the “World” Series.
Going into the Series To Determine Which Team Is The Best In The World Despite Its Only Participants Being Based In The USA Save For A Single Canadian Team (how worldly!), the Rockies had won 21 of their last 22 games. Unfortunately, the Rockies’ opponent was a real baseball team, the Boston Red Sox. The Red Sox clobbered the Rockies in a “best of seven games” series. The Red Sox were best in all of the only four games that had to be played.
Finally, it’s worth noting that I find watching baseball to be incredibly boring. Not as boring as watching golf (how the hell can anyone watch golf?!), but pretty damn boring. That is, unless I physically attend a baseball game with friends. Then it’s a nice outdoor social event with a game of baseball going on in the background. You even have to stand up occasionally–it’s good exercise!
P.S. This was originally just going to be copies of my two tweets, but it kind of got away from me. Mashing seems to soothe my writing cravings.
P.P.S. “Sincostan” is the cleverest and only math joke I’ve ever written. Or noticed, that’s probably more appropriate. Come to think of it, Sincostan isn’t even really a joke. Unless you consider portmanteaus to be jokes. Which I know you don’t. It’s okay, my feelings aren’t hurt.
P.P.P.S. Huh. I don’t have a dedicated “Sports” category. I wonder why that’s never come up before. I don’t have one for “Math” either. Weird.
Please Allow Me To Fill You In.
I’m on some very sedating medications and I’m not getting very good sleep. This is
kind of a terrible combination. If you’re one of the millions of people that’s ever really wanted to experience what it’s like to be a zombie, without all the brain eating or getting shot in the head with a shotgun, this combination is totally for you!
I’ve been spending a lot of time in bed trying to get any kind of good sleep. The rest of my time has been spent not in bed, trying to act like I’ve been getting any kind of good sleep. This act requires not falling asleep in my soup, not falling asleep in anyone else’s soup, and talking in an energetic manner in which! I just imagine! that there are! ¡exclamation points! scattered throughout everything! I’m saying!! I’m a real method actor.
Anyway, being all zombied up has made writing difficult. It’s really made everything difficult. I’m not really doing much that I want to be doing, which is a lot less of what I want to be doing than I would ideally like to be doing. I’m not getting out of the house much, let alone my bed. At least it feels that way. When you’re a zombie, you kind of lose any and all sense of time. And my sense of time was really messed up before, anyway.
It’s possible I’m spending more time out of bed than I think and that I’m doing things like blankly staring off into the distance. But I’m definitely not doing much of the kinds of things I want to be doing, like writing, playing musical instruments, or, most especially, socializing.
I’m on these sedating medications because they help ward off the evil spirits that haunt me at night. It occurred to me recently that in previously writing about my inpatient EEG, I’m not really sure that I could have given any less important information. So here’s what happened:
-The EEG was performed to test whether or not I am experiencing cute li’l seizures in my brain that are causing hallucinations, which I may have previously referred to as “evil spirits that haunt me at night.” But that was mostly facetious.
-The doctors took me off my anti-seizure medications slightly warmer than cold turkey. They did it over two days, which did not help prevent withdrawal at all. Cold turkey would’ve been better, because it would’ve been faster and there would have been the exact same amount of irritating withdrawal effects. Also, “cold turkey” sounds more appetizing than “slightly warmer than cold turkey.”
-I had a lot of hallucinations in the hospital while my head was superglued to all those EEG wires (or were they superglued to my head?) that showed all the electrical activity going on inside my brain.
-The EEG did not register any abnormal electrical activity in my brain while I was having full-on tactile hallucinations. This means one of two things: A) I don’t have epilepsy or, B) my batteries were drained. Since the notion that I run on batteries is preposterous, the doctors concluded that I don’t have epilepsy.
-Not having epilepsy is unquestionably a good thing. I mean, there’s not really any reason anyone would say, “Aw shoot, I sure wish I had epilepsy,” except in the extremely narrow vein of, “Aw shoot, I still don’t know why I’m having hallucinations.” But I’m pretty happy I don’t have epilepsy, even if I don’t know why I’m having hallucinations.
-There are other kinds of seizures that are not caused by epilepsy. They can be just as l’il and cute and in the brain as epileptic seizures, but they can’t be detected by monitoring the electricity bouncing around the brain. In fact, there’s not any one super easy way to detect non-epileptic seizures. So… that’s kind of a bummer.
-At any rate, there’s really strong evidence to support the fact that I’m having seizures and that they’re causing my hallucinations. For instance, when I take an anti-seizure medication, my hallucinations go away.
If I can break out of the bullet points (I guess they’re really hyphen points) for a moment, I’m really tired and really need to go to sleep. I’m also having what feels like neuropathic pain in my fingers. It really hurts and is not something I can remember having since chemo. Anyway, I want to finish this tomorrow so I’m not going to publish it tonight. Evil spirits that haunt me willing, I will finish this tomorrow (it’ll be today to you). That’s the plan, anyway. Something else could always come up, like, say, staring blankly at a wall, but I’m really going to push myself to get this done.
You have reached the end of Side A. Please flip the tape over to Side B.
Welcome to Side B.
Well here we are in the future! And, look! I’m going to write the rest of this post! When I say it’s the future, I mean that it’s the future of me from yesterday, a guy who didn’t really have all that much faith in the me of his future in finishing this up today. Which is today. But here I am doing it, you jackass! Take that, Past Reid!
Sorry for all the super-advanced temporal discussion, I’ll try to tone that down for the remainder of this entry.
There are only a few more things I’d like to add about the inpatient EEG:
-A big group of friends sent me a brand new iPad to use in the hospital so I wouldn’t get bored. I can’t overstate how amazing my friends are. Not just because they send me material goods, but because they’re a big, huge safety net for me. While I’m tightrope walking between health, happiness, control and depression, loneliness, and confusion, I remain confident that they will catch me should I fall.
-They’ll be there because they’ll be rallied. Amongst my truly amazing friends, there are a few pillars that have made it clear they will never stop supporting me and that they will go out of their way to see to my well being no matter what. Friends from my very early childhood through friends from college and beyond.
-My family, my sisters and my parents, are pillars as well.
-I’ve been asked a few times lately if I’ve lost hope. Each time, I’ve considered the question very carefully. And each time, I think about these pillars. They give me hope. It doesn’t go away through all the confusion and depression and waiting, of which there’s a lot. I’m very lucky.
-The waiting is the worst. During chemo, there was something planned every day to eradicate my leukemia and make sure it knew it was not welcome to come back. Since then, I have had doctor’s appointments months apart, with no new help or guidance in between. Being sick in any way, mentally, physically, whatever, anything, and waiting is the worst.
-I think I spent more time in 2013 waiting for doctor’s appointments, test results, and important phone calls than anything else. I think, despite all that I’ve gone through in recent months in trying to deal with my hallucinations and immune system (and yes, I feel very much like “I’ve passively gone through” these things rather than “I’ve actively done” them), despite those things and all the scattered, delightful brief moments of joy in which I’ve been able to take part, 2013 has been the least productive year of my entire life.
-I will never, ever have a year like 2013 again.
-In January, I will be meeting with a doctor who specializes in non-epileptic seizures.
-In February, I will be traveling to Rochester, Minnesota to undergo a full health evaluation at the Mayo Clinic. It will be a comprehensive analysis of every nook and cranny of my body. The Mayo Clinic specializes in investigating what health problems people have that no one else can seem to put their finger on.
-In between now and those two appointments, I’m working with my psychiatrist, in whose care I feel very comfortable. He wants to get me better as much I want to get better. He is very skilled at formulating new plans and new ways to take on my problems, but also keeping me grounded so that I won’t be crushed if a new idea doesn’t work. He’s taken over the role of several of my other doctors, which I would say is not ideal. It’s not how the system is supposed to work. But, honestly, I’ve had several people on whom I relied this year let me down. Or, more appropriately, drop me from a great height, smack onto the ground, left to pick myself up and move on. My psychiatrist has been the antithesis of this. He’s done everything short of holding my hand, and I’m sure if I asked, he would.
-There are several other professionals that care deeply about me and my health. But I either barely or never saw them this year, simply due to the circumstances of the year. I look forward to getting back into contact with all these people in 2014.
In closing, I’d like you to know that I grew a mustache for Movember to raise awareness for men’s health issues. As Movember came to a close, I decided to keep my mustache, as it was described variously, by other people, as “dapper” and “societally acceptable, at least on your face.” So it’s still there. Right there on my face.
Arapahoe High School Is Being Examined From All Angles; The Larger Problem Is Not.
Arapahoe High School in Colorado was evacuated today and the school shooter seems to have killed only himself. A tragedy, to be certain. But make no mistake: many children are shot and killed in this country every day and their deaths are not reported on TV. This is not a Colorado problem. This is not a school problem. This is a gun problem that is ignored and/or justified every single day.
Sorry… I Think I Might Have Forgot To Tell You That I’ve Been Home From The Hospital For Awhile.
Actually, come to think of it, I definitely forgot to tell you that I’ve been home for over a week. Please forgive me and know that, more than anyone else, I am most sorry about this to you, whose opinion and trust is by far the most important to me of anyone’s that reads this blog. The good faith and trust of all those other peons that read my blog isn’t nearly as important to me as is yours.
Staying in the hospital was extremely exhausting, as anyone that has ever stayed in a hospital can tell you. Leaving the hospital was extremely painful, which I’m fairly certain is not nearly as universally true as the exhausting aspect of staying in a hospital. It turns out–get this–that all those electrodes they superglued to my head when I first arrived had to be removed before I left! I don’t recall anyone making even the slightest mention of getting all their equipment back until I was all dressed and ready to go.
But, hey, it’s fine, no problem, people forget to mention things all the time. It turns out there’s a very advanced, finely-tuned, and highly effective method of carefully removing electrodes from patients’ scalps, so as not to damage any of the electrodes’ sensitive receptors. I can only imagine this technique is a highly guarded secret taught, practiced, perfected, and passed down by its worthiest of practitioners. It involved two steps: 1) the electrode-removal-practitioner wincing, as if in painfully deep concentration, and then, 2) that person yanking really, really hard. I must boast that some of my skin victoriously stayed attached to my head, but, in the end, it was pretty much a total blowout on behalf of Team Superglue.
Okay well that’s it from me, I’m tired of this and I’m going to bed. Please note that honesty found in the preceding sentence is just the kind of hard-hitting truth you can always* rely on from Reid Levin Dot Com Dot Net.
I promise I’ll follow up this blog post soon by writing more about what happened in the hospital in regards to, uh… well, any of the medical reasons I was actually there in the first place. It wasn’t all Dr. Poison, Dengar, and jelly beans!
In fact, there were no jelly beans at all…! Bum BUM BUUUUUUUMMMM!!!
Cliffhanger Writing Expert
*Legal Disclaimer: well, once in a while, anyway.
Me, My Brain Waves, And A Galaxy Far, Far Away.
This is me. I have a bunch of electrodes super-glued to my head that are connected to wires. You can’t see the wires or the electrodes because I’m wearing a hospital-issue turban so that I can’t scratch at any of the electrodes or pull them off my head. (I prefer the turban to the cone for which I was first fitted.) I’m also wearing a mustache in observance of Movember. Each day I’m in the hospital, the epileptologists are significantly lowering the doses of my anti-seizure medications so as to create “a big event,” which means a hallucination that both I and all the electrodes will experience.
This is Dengar. He was a bounty hunter that lived in a galaxy far, far away. He was hired by Darth Vader to catch Han Solo and the Millennium Falcon, but failed for reasons I can only assume were related to him experiencing some sort of seizure or hallucination-related problems.
This is the device through which I’m being watched every moment of every day that I’m in the hospital. It has a camera on top that swivels around to follow me when I move. It also has a microphone, so as to catch me when I’m singing to myself.
The Big Brotherly monitoring device sends all its feedback to a select group of highly trained people that constantly monitor whether or not I’m doing anything embarrassing enough for them to post on YouTube.
The device, by way of interpreting the information sent from the electrodes attached to my head, reads and shows my brain waves in real time. It also shows me slacking off in real time.
The device’s name is Yoda. I don’t know who named it Yoda, but that’s it’s name. Yoda, like Dengar, also lived in a galaxy far, far away.
I think that pretty much sums up today, except for the injections in my belly and the mechanical umbilical cord the device stuck in the back of my head so that I can enter The Matrix™. Thanks for all your ongoing support!
In My Hospital Room & Nothing About DR. POISON Is Comforting!
I was just shown to my room. This was on the first table I saw:
I don’t know that doctor! In fact, I’ve never met anyone named Dr. Poison before! This is feeling more and more like an undercovery spy op by the second! I believe that, according to those papers, this doctor, Dr. Poison, is the epileptologist who will be watching my every move (including those made inside my BRAIN!) during my stay in the hospital.
Granted, “poisson” means “fish” in French, but: A) the person who wrote the doctor’s name down could just be very bad at spelling, OR B) thhe persson whho wroote thhe docctor’s namme dowwn coulld bbe usinng somme sorrt off verry clevver codde tto hidde Dr. Poison’s trrue identitty, OR C) the epileptologist that will be overseeing the overseeing of me could be a French fish.
It’s definitely one of those three things.
I haven’t actually spoken to anyone other than the SEEMINGLY very nice person that showed me to my room.
More information as it becomes available and/or I make it up.