Sushi

I went to PAX East today. It was awesome, and maybe I’ll write about it more later, but some pain just subsided and I want to sleep now.

During my teens I had a few years where I dealt with severe abdominal pain pretty much daily. It was the least favorite time of my life and it’s the symptom I’m most afraid of returning. Almost all of my memories of taking the train into Boston were during these years, I saw a stomach doctor in Mass General for a while and spent a lot of time on that train in awful pain. Since feeling a bit better, I’ve been replacing memories of things I associate with bad moments with new, good memories. Part of why I wanted to go to PAX was to do just that since I took the train in. It was all going according to plan, until…

My stomach was a bit off when I woke up, and a little more off after a churro and pretzel at PAX. The group decided to stop off at a sushi place afterwards and I had been meaning to try sushi at some point anyway, so I took this opportunity to do just that. Big mistake! When I got home, the pain really started, and it felt a lot like it used to during those years. I had a few types of pain back then, one felt like food was grinding against ulcers in my intestines (doctors claimed they couldn’t find ulcers, but oh well), and another felt like my intestines were filling up with gas to the point where they were stretching so much they were treating. That’s the type of pain I got tonight. It started about 5 hours ago and I’m just now finally farting out the rest of the tension. I vomited a bit earlier that helped as well.

Luckily, my sick sense of humor finds the irony here funny. As long as I don’t get this kind of pain again any time soon, I’m good with this. PAX was still amazing, and I don’t even regret trying the sushi. Now if someone asks if I’ve tried it and I say I didn’t like it, if they try to argue with me I can tell them it caused this stomach pain! I plan on taking a trip into Boston soon to see an old friend, too, so that can be my opportunity to finally replace those bad “train into Boston” memories with some good memories.

Testosterone

I missed talking about a lot of things during the last few months when I wasn’t writing in my blog, and this is one of those things. It has all the features of a good blog post: It’s a story of success, and a story of how many healthcare professionals are completely incompetent.

My low libido has been a source of anxiety during my entire life. It has had a negative impact on every relationship I’ve ever had, starting with my first one at age 14, continuing to my most recent one in my early 20s. Despite that, it’s not an issue that I’ve addressed until recently because I had bigger problems. When you can’t even get out of bed, it doesn’t seem practical to worry about getting turned on. Now that I’ve made decent progress with my more important symptoms, I decided it was time to start dealing with my penis.

In early 2016, I asked my primary doctor for some blood work as I do from time to time, but this time I asked him to check my testosterone level. Like I always do when it comes to anything health-related, I educated myself about testosterone and what causes the levels to change over the course of the day. I learned that testosterone levels are highest during the first couple waking hours of the day, and that when getting your levels checked, you need to get your blood taken during these first hours because they use the high levels as a baseline. I called in to set up my blood work appointment and the nurse kept trying to write me in for a 7am appointment. I explained to her that my sleep schedule was unusual – my day usually started around 12pm-2pm, so I needed an appointment around then. It took a few calls back and a little arguing, but eventually they wrote me in for 2pm. I got the results, and my testosterone level was on the lower side of the normal range. It was not low enough for any treatment.

Towards the end of 2016 I had a physical, so again I asked to get my testosterone levels checked. I explained to my doctor about my situation earlier in the year, explained why testosterone is checked during the first couple hours of the day, and explained my sleep schedule. He said “Let me check with our endocrinologist and we’ll give you a call.” Endocrinology is the study of hormones. This is basic, fundamental stuff so I figured a hormone specialist would know what to do (you would think I’d know better by now). Sure enough, I got a call back later in the week asking me to come in at 7am. I called back and spoke with the nurse there that the endocrinologist to either write me in for a 2pm appointment or explain to me why I’m wrong about this. I explained to her how people with unusual illnesses like me need to know these things because doctors are so clueless. She told me she would again leave a message for the endocrinologist and get back to me. Sure enough, I got the call a few days later. “Hello um, Adam? So uh, the endocrinologist said um, you need to come in at 7am because uh, um, so the test can be accurate.” I started to argue back explaining that if I had my blood drawn at 7am that would be the END of my day and therefore levels would be very low and the doctor would be concerned, but I stopped myself. “Fine, let’s try it their way.”

Sure enough, I got a call a few weeks later. “Adam? Yeah, your levels are very low and the doctor is concerned.” Shocking! They put me on a testosterone supplement, a topical ointment. As I looked into it, I found that the cream is the worst form of taking testosterone. When you think of guys taking a testosterone supplement you envision them injecting it into their leg, right? Well, there’s a reason for that. The cream is very unpredictable – sometimes the body will absorb 30% of what you rub on your shoulders and other times 70%. It causes a roller-coaster effect of your hormone levels so some days you’ll be getting random erections and other days you can’t get any action going on down there. Oh well, I figured I would give it a try so I could experience what higher testosterone levels felt like and if it was indeed the answer to my libido problem. I set up another blood work appointment (at 7am again) to follow up on my levels after a couple months of taking the supplement, and the fun continued.

I was told to go to Brockton Hospital for my follow-up bloodwork. It would have been easier for me to go to the doctor’s office as it was much closer, but I went there as instructed to. As soon as I got home, I got a call from the office. “Adam, did you go to Brockton Hospital? We were expecting you here at the office.” The icing on the cake was when I got the results of that test. I was interested in seeing how my levels had changed after a couple months of treatment. Instead, I opened up the envelope to be informed that “Adam, your prostate is fine.” Well that’s cool, but what about my testosterone levels?

Later this week I meet with the chump endocrinologist. I’ve read a bit about what I can expect during this appointment. Maybe he’ll continue with the cream, or if I can convince him to switch me to the shots, he might prescribe a low dose that will cause a similar roller-coaster of hormone levels. I’ll probably end up having to find a competent doctor in Boston to give me what I want.

Did the testosterone work, though?

Hell yeah it did. Before this, I imagine if most people thought back to the last time they were really horny it would only be a matter of hours, but I can only really recall one moment in my life when I was really horny in my late teens. Since being on this testosterone though, I’ve had a healthy sex drive as a young man like myself should. Look out, ladies.

 

 

Stimulants and Sedatives

For me, insomnia comes in waves. I will have no issue sleeping for a few months, then I’ll have a few weeks in a row where I can’t seem to get a decent night of sleep. What’s most puzzling this time though is, I’ve made several changes lately that should have made getting to sleep (and staying to sleep) easier:

  1. I’ve lowered my Adderall dose, which has helped my shoulder pain a lot. My amphetamine tick is rubbing my fingers together, which causes a repetitive strain injury in my shoulders.
  2. I’ve had more regular physical activity than I’ve had in many years, going to the gym regularly.
  3. I’ve tried all sorts of additional sleep aids available to supplement the Trazadone/Seroquel with: Unisom, Benadryl, Valerian, etc. Anything with limited risk to my brain chemistry.

Nothing worked… so I’ve resorted to something I’ve deliberately avoided my entire life: benzodiazepines. Benzos aren’t something that should be taken every day, because physical dependence happens fast and it sounds like benzo withdrawal suuuuuucks.

A while ago my psychiatrist offered me Temazepam (Restoril), but I needed to take medication to sleep every night, and I was not willing to deal with the problems that came with taking that nightly. A while after that, I was experimenting with all sorts of different things, looking for something stimulating to take during my Adderall break days. The only thing that cut through my severe fatigue at all was the curiously named CRL-40,941, commonly referred to as Flmodafinil among other things. It is one of many Modafinil analogues and perhaps the strongest. It is art of a class of drugs called “wakefulness-promoting agents.” Well, that description is very accurate. In fact, I was not able to sleep at all the night after taking it. After reading up it appears I am not the only one with this problem after taking modafinil analogues, and benzos are the only thing that works for others in this situation. Still though, I held off on the temazepam and just stuck to my Trazadone/Seroquel combo. I am still going to try using the night after a dose of Flmodafinil, but if my current bout of insomnia increases, I’m going to need to use it occasionally when I am in dire need of sleep after falling far behind as well.

The experience of getting prescribed it brought back some familiar sad realities about the healthcare system – many drugs that should not be taken daily are prescribed to be taken daily, and without warnings of the consequences. Before taking a new drug I always learn all about it for myself first. I read up on dosing information, side effects, personal experiences, drug interactions,  the way it affects the brain chemically, everything. There is a lot that can go wrong when you are on a lot of medications, and many people learn that the hard way. There are many stories out there from people who trusted their doctor and took a benzo as prescribed – every day. A couple of months later they tried to stop and started having all these awful withdrawal effects.

Maine Trip

I took a two day trip to Maine recently, and I shook off a lot of chains in the process.

I have a ton of memories of situations that caused me a lot of pain that I’ve been conditioned to avoid. You only have to put your hand on a hot stove once to learn to never do it again. There are many “hot stove” moments in my past.

Some years ago I drove a friend of mine to go see her girlfriend that lived an hour away. My friend didn’t have a license, and I had just gotten mine, so I figured a long car trip would be fun. It was about two hours each way, and afterwards my joints were so sore I could barely walk for a few days. This conditioned me to avoid long car trips.

I’ve been at concerts where my back will start hurting so bad halfway through the opening act that I can’t stand up anymore. Again, I learned to avoid spending too much time up on my feet.

I was able to improve my health a lot the past year or two, so I decided to challenge all of my fears. My situation changed, but I was still playing by the old rules. I need to overwrite these bad memories with good ones. I needed to shake off my chains!

I drove a couple hours north of my home state of Massachusetts to Maine. A good friend of mine grew up there, so she gave me plenty of ideas of where to go and we kept in contact by phone during the trip. I visited some beaches, ate some great food, spent hours walking around Portland, and played a couple open mics. Unlike most open mics that only give you 10 minutes to play, the first restaurant gave me 40 minutes! The second bar I played at wasn’t and open mic anymore but I was able to talk my way into playing for 30 minutes. I met a lot of very interesting people that kept me company after playing my music.

These were the happiest two days I could remember in recent memory. I was on top of the world. Sure I was sore as hell afterwards, but I just didn’t care.

One of the more annoying features of Chronic Fatigue Syndrome is post-exertional malaise. Any physical activity is followed by a long period of immune system flareups. This means a variety of symptoms such as muscle aches, dry skin, nausea, headaches, and other things. Any time I do a lot of physical activity for a long period of time (hours or a couple of days), it is followed by a couple weeks of all of my symptoms flaring up and feeling like I had a bad cold. After my two-day Maine trip, for the first time, I didn’t get sick afterwards.

This trip filled me with a lot of confidence for my future. I really needed it. I can’t let past memories of bad experiences prevent me from doing things, I need to constantly challenge my limits. Things change over time, but if you aren’t constantly challenging your limits, you’ll never know what you’re really capable of.