Top 5 Experiences of 2019

I’ve really come to appreciate the value of making memories and having experiences over the past few years. My policy is if I have the opportunity to do something, I always do it. Maybe it’ll be physically challenging at times but in the long run, the brain emphasizes good memories and de-emphasizes bad ones. If I attend a kickass concert I won’t remember my back hurting when I reflect later on, I’ll just remember the fun I had. With that in mind, I’ve gone absolutely nuts this year – and we’re only 8 months in so far.

#1: G1 Supercard – Madison Square Garden – New York City, NY – April 6, 2019

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I decided that I was going to Wrestlemania and was in the process of putting the trip together when I noticed that there was going to be a big show going down the night before. Non-fans might wonder what the point is when I’d be going to whats basically the Super Bowl of wrestling the next night. It’s a different style. WWE is “sports-entertainment,” glitz and glamour, characters and gimmicks. This show was put on by a joint effort of Ring of Honor and New Japan Pro Wrestling, known for more of an athletic, hard-hitting, high-flying form of wrestling… and wow, did it live up to that description.

Ring of Honor has been around since the early 2000s and is basically the first big step on the way to the top. Many of the guys in WWE right now were in ROH 10-15 years ago. NJPW has been around since 1972 and is the biggest promotion in Japan. Slowly with ROH’s help they’ve been going global putting on shows all over the world and releasing content catering to an English-speaking audience.

I’ve never watched much ROH but have always been aware of them. I started watching NJPW’s biggest shows over the past couple years and have always liked what I saw. Again, their hard-hitting athletic style keeps you on the edge of your seat never knowing when the match might end. What I love the most about NJPW though are the entrances. The dimly-lit arenas contrast with the laser lights and hit my brain just right. I never thought I’d get to experience that in person without going to Japan! Take a look for yourself.

This was a historic show because MSG has been WWE’s home turf since at least the 50’s. There have been disagreements lately about royalty fees for taping shows there, so WWE backed out of their contract and ROH/NJPW swooped in, putting on the first non-WWE wrestling event.

Favorite moment: Bandido picks up both of his opponents on the top rope before hitting an amazing backflip slam.

#2: J-Sin Trioxin Tribute – Debonair Music Hall – Teaneck, NJ – June 30, 2019

trioxin.jpgBack in 2003, I was trying to get involved with horror punk bands and labels in any way possible. I’d send letters with a few bucks in the envelope to labels asking them to send back catalogs. I’d offer to make websites, design flyers, anything. I didn’t actually know how to do any of that stuff, but I figured it out on the fly. One day I saw that a big horror punk show was going down in Baltimore, MA that summer called Ghoul’s Night Out Fest 3.

In 2003 I had been through the wringer between all these sudden, severe health problems, losing touch with friends because I could no longer go to school, a brief stay in a psych hospital… so I figured this would be a good time to ask my parents for a favor. They agreed, found some stuff they wanted to do in that area, and off we went. There I was able to finally meet in person these bands that I had been in contact with over the internet. J-Sin Trioxin had just started playing bass for Blitzkid, one of my favorite bands in the horror scene at this time.

Sadly, J-Sin died last year at the age of 39. This show was to celebrate what would have been his 40th birthday. Members of his family were there including his mother who was brought to tears when she saw how many lives he touched.

As I was getting into horror punk, I read that the Misfits had a singer I’d never heard of named Myke Hideous. He wasn’t with them long, just filled in on a few tours. I explored his discography and liked everything I heard, he has a very unique sound. Once I read his autobiography, I really started liking the guy. He too had health problems throughout his life, dealing with cancer and the effects of its treatments. At this point in my life I felt very isolated. I was very sick yet being treated like an asshole as ME/CFS was even less understood then than it is now. Myke was the first person I identified with who was doing the types of things I wanted to do.

I had been in contact with Myke in recent years through Facebook. He quit the music scene many years ago, preferring to leave the bullshit behind. Pretty much every shocking reunion has happened by now, but I thought Myke was truly done. When I saw him post about a reunion show, I bought a ticket immediately.

I’ve never cared about autographs but I thought it’d be cool for Myke to sign my straight jacket. He was the first musician I saw use one as part of a performance, even before I started getting into Alice Cooper.

Favorite moment: Being able to stand front row center, something I never thought I’d be able to do at a concert, for a musician I never thought I’d be able to see.

#3: Wrestlemania 35 – MetLife Stadium – East Rutherford, NJ – April 7, 2019

wrestlemania.jpgMy two main goals for 2018 were to get into better shape through gradual exercise and to make/save more money. I had a trip late in mind for late that year that I knew may or may not work out. Turns out it didn’t, so I needed to find something big to do with the money I’d saved up. I saw that Wrestlemania was going to be within driving distance and I was off to the races.

Since WCW died in 2001, WWE hasn’t had any real competition. The shows started really suffering as a result, especially over the past few years. Each show felt more like a commercial for their brands and the network. I started watching less and less. However, I wasn’t going to pass up an opportunity to go to Wrestlemania!

The main theme of the show was that the fans were pulling for certain wrestlers that had put in a lot of work over the years but never got their just due. Everybody wanted to see Kofi Kingston defeat Daniel Bryan for the World Championship, and for Becky Lynch to win the Women’s Championship. The crowd got their wish and the place erupted into a sea of cheers.

Here’s Joan Jett playing Ronda Rousey to the ring in the main event.

Favorite moment: The overall atmosphere, the sights and sounds, fireworks… Wrestlemania!

#4: Niagara Falls / Buffalo Trip – August 3-5, 2019

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My dad and I wanted to go somewhere over the summer but couldn’t decide what to do. There were too many variables. Maybe we’d meet up with some of the Missouri family somewhere, maybe my brother would be joining us, maybe we’d go to Philly, Gettysburg, we didn’t know.

I got my passport last year for a trip that didn’t pan out – they wanted me to send in extra stuff to confirm my identity and the process took too long for the trip in mind… perhaps the fact that at that point I’d never filed taxes was the reason why. In any event, I got my passport and I wanted to use it.

I knew my dad was going to be taking that week off, so I sat myself down and proposed a trip exploring the area. Originally I included Toronto in the trip, but the more I read about Buffalo/Niagara Falls area, the more I realized there would be plenty to do there alone. Luckily a friend of mine sent me a list of things to do since she has spent a lot of time in that area, which helped me put a map together.

As a bonus, after getting back home we took a day trip with my mom to Hull, MA. Hull’s been on my radar for years for a secluded, concrete military fort there.

Favorite moment: Maid of the Mist boat ride under the falls.

#5: Bit Brigade – PAX East / Great Scott – Boston, MA / Allston, MA – March 30, 2019 / August 7, 2019

This was the third year in a row that I attended PAX East, a video game convention in Boston. Since you have to be on your feet the whole day it can be tough. The first year I was only there a few hours. This time, I was there all day.

As the day was coming to a close I heard that a concert would be taking place, so I got in line. I’ve always been a fan of old school video game music. I’ve played some songs on guitar, but my favorite thing to do is play drums over medleys of old video game tunes. There are a lot of video game cover bands out there but most overdo it with modern metal components like double bass drumming and pinch harmonics which isn’t my style. My favorite video game band has always been The Minibosses that play more of a straight rock style. As soon as Bit Brigade started playing I noticed that they sound almost identical to The Minibosses, but with a bonus: they also have somebody speed running the game on a big screen while they play the soundtrack!

Unfortunately, I had to leave halfway through their set at PAX so I could catch the last train back home. I’ve kept them on my radar since then and luckily they came back to do a show on August 7th. I wasn’t sure if I was going to go or not because I had just finished that tiring road trip, plus I spent the early hours of the day in Hull. I eventually decided that yes, I was going to go. I enjoyed the hell out of it.

Favorite moment: Contra, one of my favorites that I grew up with. Can you recite the Konami Code?

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The Importance of Environment

Think about the way your dentist’s office smells. When that smell is in the air, how does it affect you? Do you start to feel anxious or uncomfortable like you Would rather be anywhere else? Does it trigger memories of previous appointments, maybe that one time when the dentist poked the wrong spot and stabbed you in the gums?

Our environments have a much stronger influence on our feelings and behaviors than we often realize. Even when we’re consciously aware of some of a particular environment’s effects, there are others at play that we don’t realize. Personally, if I’m trying to accomplish something, the worst place I can be is the spot I wake up in every day: my bedroom.

I’m very comfortable in my bedroom. I have a large bed with plenty of room for both my 6’1″ 200lb body and my laptop. Distractions are few and far between living on a quiet street surrounded by trees which muffle most sounds emanating from the nearby highway. Inside the house is equally quiet, as I live with my quiet, predictable parents. To get even more comfortable with my surroundings, I recently covered my plain white walls with images that excite and inspire me:

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I’ll write about my walls in this blog at some point, but for now you can read more in this Reddit post.

However, laying in bed in front of my laptop is the way I spent most of my time during my worst years. After spending so many years feeling like crap wasting time on my laptop while laying in bed, I’m now conditioned to do exactly that: feel like crap and waste time on my laptop whenever I’m laying in bed. I browse Reddit, check Facebook, and search YouTube. The only productive thing I regularly do while laying in bed is my daily moneymaking routine which usually consists of an hour’s worth of whichever marketing jobs are available for the day, earning me a few bucks.

It’s hard enough dragging my ass out of bed on days when I feel relatively fine, but if I’m behind on sleep or otherwise dealing with additional fatigue it can be a real challenge. I started becoming aware of the fact that I subconsciously look for any excuse to stay in bed a little longer, fooling myself into thinking I’m being productive. For example, I have a set of tools I developed to complete those aforementioned marketing jobs more quickly and efficiently – I’ve made buttons to copy-and-paste email addresses and social media links, take pictures of the screen, etc. If I think of a way to improve that program by adding a new feature or improving an existing one, I can stay in bed for another hour while I write some code.

My solution to the problem of my room is simple: get the hell out of it. Not only do I bring my laptop somewhere else, but I have a separate user account that I log into while using my laptop out in the world. This account looks like a fresh install so there are few desktop icons and no programs that start automatically to minimize distractions. I originally created this account to use when I do the Rick’s Music World open mic livestream each week. I wanted peace of mind knowing that I could leave my laptop unattended without my personal files being accessible. Over time, I realized that this account is also a great way to separate myself from my routine.

The library down the street has free WiFi and quiet rooms that can used for up to two hours per day. I’ve yet to explore any other options, but there are plenty: libraries in surrounding towns, restaurants like McDonald’s, Dunkin’ Donuts, local cafés, etc.

The only way I was able to write this blog entry was by getting myself out of my unproductive environment.

What Sick People Are Sick of Hearing (You’re Probably Guilty of It)

I want to talk about something most people don’t think about and it’s something most people are guilty of without realizing it. If you know anyone who is sick – either chronically or temporarily – it’s something you’ll want to read.

I still stick around in some online chats related to the game I used to play/moderate and have developed and maintained friendships from people around the world. I began talking to one girl shortly before she was diagnosed with cancer. She’s a young girl in her early 20s, and it sucks to have to go through something like that especially when you’re young. She knows my health situation and that I find all health and illness topics interesting, so I told her to keep me up to date with the experience. We spoke off and on, she told me about all the shitty things she had to deal with – physical discomfort and the mental challenges that go along with some of the procedures… the cancer’s effect, the drug side-effects, uncomfortable preparation for exams and operations, etc. After talking for several weeks she thanked me. She told me that she spoke to many people about her situation, friends and family, but talking to me was so refreshing. It’s not because of something I did, but rather something I didn’t do: I didn’t tell her “You’re so strong, you’ll get through this!” “Keep fighting, we’re all behind you!” or anything like that. I listened and replied in a very matter-of-fact manner about the realities of dealing with such a thing: it sucks. I didn’t insist the future was bright, because when you’re going through such an ordeal you’re concerned with the here and now. She told me that my reaction was so refreshing because everyone just kept telling her to get through it and fight hard. On top of her existing pain and discomfort, comments like this also made her feel like she was letting people down by not being stronger throughout the ordeal. I explained to her that I reacted this way because I had gone through the same thing myself many times over for as long as I’ve been sick. When you’re sick or otherwise uncomfortable or in pain, people feel like they need to do something about it. In my experience, that means that they do one of two things: The worst of the two is they’ll offer stupid advice, suggesting you try something that either would have no effect or something that you’ve obviously tried when the problem first started. To give an example of each, one person suggested I try chicken soup to cure my ME/CFS symptoms, and another suggested that I try getting more rest. The other less ridiculous reaction people have is to offer verbal support: things like “You can do it! We all believe in you! You’re so strong, you can beat this!” Unless you’re the only person they’ve ever spoken to, they’ve heard this dozens of times already ad nauseum.

Often when somebody talks about the issues they’re having they just want somebody to listen and understand the things they’re going through. Personally, when I bring up the fact that one or many of my symptoms are really bothering me, all I want is for somebody to know that it sucks. That’s all I need. The pain or discomfort will pass, I already know what I can do (if anything) to help, but for now I just want someone to understand what I’m going through.

Sometimes I feel obligated to let people know that I’m not feeling well because I can tell that the discomfort is affecting my behavior. It hasn’t happened as much in recent years, but especially during my teens when my illness was just starting to take off I would frequently have people misread my body language. People would ask me why I was mad or sad when in fact I was just feeling sick. After so many years of this, I learned to explain myself before there was a chance for people to make any assumptions.

If you’re reading this and have been guilty of the things I mentioned in this post, don’t worry about it, most people are. You don’t need to apologize to anybody or even feel bad about it. It’s just one of those things most people haven’t realized or ever thought about. Just keep it in mind for the future and you’ve done your part.

The Absurdity of Healtchare

I learned a bit about how ridiculous the healthcare system is recently.

I had been taking Adderall just 2 or 3 times a week due to the side effects, so I was looking for something else to take during the other days. After some research I decided to Nuvigil (Armodafinil) a “wakefulness-promoting agent.” Once the patent of Provigil (Modafinil) expired, the company created Nuvigil to continue their profits. However, I had been on Provigil years earlier and read that Nuvigil is similar yet different in ways that made me want to give it a shot.

I asked my primary doctor which kind of doctor would prescribe it, and he told me neurology deals with that. I went on my insurance companies website, called some neurologists and asked if they prescribed Nuvigil. One did, and I set up an appointment. We met, I explained to him my situation, and he told me that I’m a great candidate for Nuvigil. Excellent! I didn’t realize it would be that easy. “There’s just one problem,” he says. “Insurance won’t cover it if I prescribe it, so call your psychiatrist or rheumatologist and I’ll guide them through prescribing it.” I’d never heard that one before, but I was hoping it would be an easy task.

I called my rheumatologist first since the neurologist claimed he knew the guy. My rheumatologist calls back and says “Sorry, but it would be better if you ask your psychiatrist.” Then, my psychiatrist explains to me that it’s very difficult to fight with the insurance companies to get them to prescribe a drug like this. Why? Well, they will say “Why not just take Adderall every day?” because it’s cheaper. They might cover if it I claimed Adderall didn’t work for me and stopped taking it, but I didn’t need a replacement – just something else I could take during the rest of the week. Insurance’s option for me is to either take Adderall every day or not at all, and neither of those options work.

This let me know that even if you find a doctor willing to prescribe you a drug, it doesn’t mean the insurance companies are going to go for it. It’s just yet another hurdle in the path of getting better. This situation was just one of many that opened my eyes to the fact that the healthcare system isn’t designed to make sure whatever the patient needs to feel better is done, no. It’s designed to make a profit, like everything else.

So what did I do? I kept looking, and discovered there is a legal alternative called Adrafinil that can be purchased without a prescription. Adrafinil converts to Modafinil in the body.

This entire situation, despite being a huge hassle and a game of hot potato with my doctors, taught me some valuable lessons about how to navigate our flawed healthcare system.

Explaining CFS to the Ignorant

We’ve all encountered some ignorant idiots in our time. Here are some situations I’ve encountered:

  • I told my primary doctor that I had been seeing for a year that I was going to apply for disability. His response? “Why?”
  • School teachers that tell you that they’re offended when you rest your head on the desk during class, how disrespectful.
  • Parents that think you’re just being difficult and don’t want to get up and go to school.
  • Randoms on the street that say “Chronic Fatigue Syndrome? Oh, I have that too! I’m so tired after working my 8 hour shift!”
  • Fatigue, so like what, you just get tired sometimes? Get some sleep and you’ll be fine.

 

We want them to understand how we’re feeling, but how? After years of dealing with this, I’ve learned a few things. You need to compare the feeling to something they are familiar with. When I first got the CFS diagnosis, I looked at some books and what I found was very depressing quote. I’ve since used it to my advantage to get others to understand me, however.

“CFS patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

By comparing the feeling of living with CFS to that late-stage AIDS, someone undergoing chemotherapy, it helps garner some understanding. People as a whole have a lot of sympathy for those dying of cancer and AIDS – many have had a friend of family member stricken with these ailments.

You can find more descriptive quotes here that really paint the picture of what life with CFS is like: https://thoughtsaboutme.com/quotes/

Chronic Fatigue Syndrome – What is it?

If you’re reading this, you probably already have a decent idea of what Chronic Fatigue Syndrome is, or you’re living with it every day… but I can’t have a CFS blog without a post about CFS, right?

Chronic Fatigue Syndrome is a very mysterious illness characterized by extreme fatigue and just about every unpleasant symptom you can think of – muscle pain, abdominal pain, headaches, sore throat, insomnia, etc. CFS is not an illness with a known cause, but rather a name given to a set of unexplained symptoms. After being tested for everything else that could possible explain the symptoms (AIDS, Lyme Disease, Lupus, etc) the CFS name is given.

In addition to this already giant burden, CFS sufferers have to deal with the stigma attached to the illness. Since these symptoms are unexplained and cannot be measured, some people (and even some doctors) doubt that his is a real condition “it’s all in your head.” These symptoms are not psychosomatic and it’s very offensive to be told these symptoms are imagined. It implies that the sufferer has some amount of control over his or her illness and chooses to keep suffering. Over the years I’ve learned some techniques to educate the ignorant.

Treatment varies from person to person as there is no common treatment. Personally, I disagree with a lot of the treatment suggestions out there which is partly why I’m writing this. One common suggestion you’ll see is to not push yourself. If never pushed myself, I wouldn’t know what I’m capable of and I wouldn’t have been able to experience my amazing trip to Maine. It’s smart to not go beyond your limits, but you could constantly be challenging your limits. Situations change over time, and you might be capable of something you weren’t last year. You’ll never know if you don’t try.

At first glance, CFS is an illness with no happy endings… but it CAN be done. It’s up to you to take control of our life.

How I Finally Got Better

It was January of 2014, and something needed to change. I had been taking Adderall every day many years, and by now, tolerance had diminished all of its positive effects. Taking it only prevented withdrawal. I felt a constant burning in my shoulders, I wasn’t sleeping well, and I had no energy. I needed to do something, but I wasn’t sure what. Adderall was the only drug that ever had a significant impact on me and without it I wouldn’t have been able to graduate college or have a life outside of my bed at all. The only way it was ever going to work again was if I took a long break from it to reset my tolerance, so that’s what I did.

The next year was about what you would expect from amphetamine withdrawal. I would sleep for 12+ hours a day, quickly find something to eat and lay on the couch for a few hours watching TV. I’d then go to bed, and restart this process every day for nearly a year. I had lost contact with most of my friends a couple of years earlier when things started getting bad, and during this time I completely dropped off the map. This was a very rough period and was the closest I came to losing mind since I had in my teens. When my symptoms first started in my early teens, between the sudden constant pain that only worsened and the loss of all my friends due to the fact that I couldn’t go to school anymore, I lost it and had to spend some time in a psych hospital. I had developed a strong mind capable of processing all of these issues since then, but the isolation this year almost pushed me over the edge.

When I felt like I had been off the drug for a sufficient amount of time, I decided to start taking it again. The whole reason why I was in this mess in the first place was because I took it every day, so I decided to cycle it. I would only take it a couple of days a week. It was amazing. I hadn’t felt energy like this since I started taking it in the first place as a teenager. It allowed me to function a couple of days a week, which at the time was amazing. I managed to pass a some college classes (one per semester) during this cycle. I was very fortunate to have these two days, however I quickly realized I wanted more.

I started using my two days of brain power to make use of the internet and research medications I hadn’t heard of before. I also learned a lot about how the brain works so I could tell which drugs might be the most beneficial to me, how to take them safely, and how to avoid tolerance. I had seen all the best doctors in the world for years and they couldn’t figure out how to help me at all. I figured it was worth a shot to try it on my own.

I never had much luck with rheumatologists before. Much like other doctors I saw, they would run their tests, find nothing wrong, try a couple of meds, and give up. In my experience if you go to a rheumatologists complaining of muscle pain, they will try you on Neurontin and Lyrica and give up. I read about a drug called Baclofen and brought it up to my doctor. He had heard of it, but he needed to get his tablet out and do his own research to learn how to prescribe it. I thought “He needs load up Wikipedia to learn about this drug?” Unfortunately, the maximum he was willing to prescribe was only about 1/3 of the dose I needed. High-dose Baclofen has a variety of benefits, and studies exist showing that these doses are safe and without side effects. In France, they use high doses to treat alcoholism with great success. Baclofen helped lessen some of the effects of Adderall, so I now had a winning combination to be even more productive on those two days.

I had been on Neurontin previously without success. I was taking it on my Adderall days to try and lessen my pain, but it has little effect. I thought “Why don’t I try it on my tired days and see what happens?”It is chemically similar to Baclofen, a medication I’d like to take daily but couldn’t get a high enough dose. I spoke to my psychiatrist about it and he wrote me a prescription. It was then that I realized I had been taking it all wrong before. I found if I take Neurontin the day after I take Adderall, I still have enough leftover dopamine floating around in my brain and when I throw the Neurontin on top of it, I’m able to keep my sharp brain for the rest of the day until I go to sleep. If I take Adderall 3 days a week and I take Neurontin the day after, that gives me 6 days a week where I can function instead of the previous 2-3.

I was still having pain, though. The various doctors I saw over the years were hesitant to give me any sort of painkiller despite my severe pain. For a couple of years I dealt with the pain by downing a pint of vodka a night, and that solution doesn’t last forever without causing some serious problems. I discovered kratom, a plant from Thailand. I read that it tickles the morphine receptors in your brain, yet it is safe and does not cause bad withdrawal. It is self-regulating since if you take too much it just upsets your stomach. It’s very popular in the chronic pain community as well as the opiate addict community since they use kratom to get off of more dangerous drugs like heroin. This all sounds too good to be true, why hadn’t I heard of this before? Well, it lived up to the hype. For the first time in my life, I had something I could take when the pain started getting too bad.

Now at my time of writing, my week looks like this – I am superman 3 times  week, tired but very functional another 3 days, and totally incapacitated one day a week. It’s not all perfect – I still have ups and downs: I might have a couple weeks of insomnia every few months, a week here and there where my fatigue is very bad, some pain, immune system flareups that dry out my skin, etc… but I am enjoying life. I got my friends back, I can go on long trips without being uncomfortable the entire time, I can start and finish projects, I can do things and enjoy it.