Archive of ‘personal’ category

19
Aug
2021

Consulting with my care team about my health.

categories: personal; word count: 865 words

This has been a conversation long in the making, and I’ve thought about it for a long time now.

For those of you who don’t know, I have nocturnal, non-convulsive epilepsy. I have been able to keep my driver’s license as long as I didn’t drive at night, because for the longest time with the exception of one seizure (considered a “one-off” by my care team), I only had seizures at night, so it was safe for me to drive during the day… even though I couldn’t bring myself to get behind the wheel of a car after the first seizure that I had in April of 2019. It was literally as I was preparing to get back into bed after using the restroom at around two in the morning. For a few years, almost until present day, this was something that I was comfortable with — well, not the actual driving part — because the timing of my seizures was fairly predictable, always at night. Sometimes I slept through them. Other times, I’d wake up during one. I could convey to someone else that I was having a seizure even though speaking was difficult, and I rode through feeling like my brain was being shocked and an egg that was being smashed against hot concrete as hard as it could be thrown by thinking of my children. They were my bright spots in the midst of all of this, and thoughts of them helped keep me grounded until the seizure finally ended minutes later (“forever”, heh).

Recently, I began to have seizures earlier in the day. I also became completely apraxic during them, unable to speak at all, and some seizures caused me to drop to the floor in the midst of them (they’re still non-convulsive, I would just literally drop to the floor if I was in a standing position). I still retain the ability to type and write, even though that is incredibly difficult. Auras have gotten much shorter, which means that if I were to drive I would not have enough time to pull off of the road and ride through one as it began. A lot of them cause me to “blank out” in the middle of them, and if you’re speaking to me I will not get the full gist of what you are saying because words will blank out… either one or several. I kept, and am keeping, my care team abreast of all of these developments. I was, and am, at the border of having to relinquish my driver’s license, which I’ve had since I was a teenager. But I decided to make that decision for myself because getting behind the wheel of a car causes me significant anxiety (I start recalling previous seizures and worrying that if I do drive, even if it is this one time, I will have a seizure behind the wheel… as I put it to a well-meaning relative, “I don’t want to put this into a light pole”). I made the decision to relinquish my driver’s license because I have a physical condition that makes operating a motor vehicle unsafe, and I do not see this ever being something that will simply… go away and stop. In the interim, I have been using Lyft — I am amenable to using Uber if it is better though, but my experiences with Lyft have been good — to transport myself places. I did this when it was still a thought to relinquish my driver’s license, something not committed to.

To me, this feels like the “end of an era”, and in that regard it does feel a bit sad. I did have a few well-meaning relatives who wanted me to hang onto my license for six months to a year “to see if things got better”, but as I continued to write about my seizures online, they realized that things would not get better. (And for the record, I was not epileptic at all when I got my driver’s license.) It’s a bit sad to realize that driving is something that I will never do again, but I also feel content with the decision to voluntarily relinquish my driver’s license because I realize that it is no longer safe for me to drive, the idea of it causes me significant anxiety, I have other ways to get where I need to go, and I am doing what is best for me and those who I love. I am at peace with this aspect of my health, as I continue to take medication for it (originally the maximal dose of Trokendi, now nearly the maximal dose of Gabapentin). I intend on switching my neurologist to one in this city for an easier commute to get on some quick-acting medication that will help stop a seizure in its tracks… and no, not even then will I feel comfortable or safe behind the wheel.

It is truly the end of an era, and I am going to continue to do what is best for me and those who I love.

I do not intend to drive again, even if in two years’ time I could theoretically retest depending on my health.

17
Aug
2021

Nerve blocks and me: a thing that is not working.

categories: personal; word count: 293 words

I got my first nerve block on the left side of my head at the occipital nerve for migraines.

One day I will be able to spell that. Getting back to what I wanted to write about, though…

It seems that these hit and they miss. For some people they work amazingly well and they only need them every four to six months or so. Other people need them like… every two weeks if their insurance approves it, but they help. And for other people, they do not work for a myriad of reasons. Sometimes the nerve gets nicked and that causes problems. Other times, the nerve block intermittently does not work. And then sometimes the nerve block just plain does not work at all. On the worst side of my head, I feel like I am between it intermittently not working and it completely not working. I put myself back on prednisone since that has a history of helping with migraines, particularly migraine clusters, even though that was the last thing I wanted to do… and it made things bearable. I seem to be someone for whom these do not work, although I am going to give them the requisite week to see if things turn around and my migraines become more bearable. If that does not work on either side, I will discuss giving them more often with my pain management clinic to see if that makes them “stick”, and if that does not work, I will ask about excising the nerves. X-rays that I have had done have confirmed that they are the problem, especially the right one.

There are still some things that can be done to help ease my migraines. I am willing to explore all of them.

12
Aug
2021

I’ve never mentioned this in here, so here goes…

categories: personal, television shows; word count: 576 words

Almost all fandoms have their “dark ships”, which are characters paired together in a romantic context that… aren’t really spoken about. Fans of these ships relegate themselves to the various corners of the Internet where they can more freely talk about them with like-minded fans, but they’re not something that is brazenly waved around like a flag. You don’t trip and fall into them. It takes sometimes significant effort to find them.

However… in the Supernatural fandom, people actually ship Sam and Dean Winchester — brothers — and they are brazen about it. This represents a significant difference in how dark ships are normally treated. People put it in their biographies on Twitter (calling it w*ncest, and for personal reasons I refuse to write that any other way), in some other social media biographies or about pages as well, and they are proud of it.

Without getting into the genetic and moral implications of that (“ship and let ship”, even if you grit your teeth doing it), a lot of the respect that Hellers — people who ship Castiel and Dean Winchester — attempt to give w*ncest shippers is completely lost on them. It’s flouted. Sometimes it’s shoved in people’s faces. Hellers are sometimes repeatedly, loudly told that they are “shipping necrophilia” because Castiel originally, consensually inhabits the vessel of Jimmy Novak before Lucifer makes his vessel explode and Chuck just plain resurrects him as that vessel. (But what about Dean, who Castiel literally raised from the dead at the start of season four? This is almost never brought up in the context of shipping Dean with… well, anyone else.) We’re also sometimes repeatedly, loudly reminded that there is a significant age gap between Dean and Castiel — suspending some belief here, because this is a supernatural television show that we’re talking about, Castiel is an angel who has been around since nearly the dawn of time, that is to be expected, and both of them are adults. I always failed to understand that attack on the Heller ship, though, to be honest…

One of the things that I also dislike about dealing with those who ship w*ncest are their proclivities to drag people’s personal lives into it. During a debate, I mentioned that I had sent my autistic son (Bub) to his room because he was beginning to melt down. This is literally part of his care plan. I was accused of “sending my child away so (that) I could talk on Twitter”, which was literally the furthest thing from the truth. Not too long ago, because I was not physically able to distance myself from him in time, he bit the top of my right breast so hard that he took out a small chunk of skin and it began to bleed through my shirt. Within forty-eight hours, it turned into severe cellulitis because I am immunocompromised, which prompted a visit to urgent care to eventually find out that my bite wound had been infected with MRSA. Yes, human bites can do that.

Given the… injury as it was, the doctor that treated me at urgent care was surprised that I didn’t pass out.

I’ve been working with Bub’s occupational therapist on ethical restraints to prevent injury during meltdowns.

But seriously, I do the things I do — especially with my children — for reasons, instructed by their care teams.

On another “but seriously”, though, if you want us to respect your ship… please actually respect our ship.

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