August 2021 archive

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.

15
Aug
2021

I know I mentioned some of this already, but still.

categories: television shows; word count: 405 words

Based on Genevieve Padalecki’s Instagram stories, we’ve come to learn that she caught COVID-19.

Her husband and her spent the better part of how long jetsetting maskless in Italy, though? They behaved as though there was absolutely no pandemic going on. We also know that Jared himself has not been wearing a mask when he should have been, when he was in close contact with various fans of his work, and to a point in Texas of all places where the Delta variant is absolutely raging. As much as I wish Gen well and hope that she does not spread it to her husband or other members of their family, such as their children who are all too young to be vaccinated, I feel like a lot of this could have been avoided if they had waited to go to Italy until the pandemic was well and truly over, or even if they had consistently worn masks, especially while in Italy. I feel like a lot of things that could have been avoided — or, at the very least, mitigated — by adhering to advice given from reputable agencies and following proper safety protocols, but the ball seemed to be dropped on absolutely all ends. It really does seem like some people think that getting vaccinated (and being in comparatively good health) will completely prevent you from coming down with COVID-19, and this is definitely not the case, especially with the Delta variant as contagious as it is. It seems to be virulent, too.

As someone for whom COVID-19 infection could potentially be tragic, reading about all of this from the vantage point that I have has been incredibly frustrating, to say the least. I avoid crowds. I shop online when I can, migraines from extended electronic use being damned since COVID-19 infection would be a lot worse for me. I wear a face mask as needed. My oldest son consistently wears a face mask now as needed, and my youngest son has made progress keeping one on his face for longer periods. We all use hand sanitizer as needed, and we don’t take trips outside of the house unless we have to. Have so many people really forgotten that we are in the midst of a pandemic, or is it only the chronically ill and/or disabled people and their families who remember? Because given recent events in general, I would really, really like to know…

14
Aug
2021

The curious case of the Jarpad stans, y’all.

categories: television shows; word count: 384 words

Over my course of… being active in the Supernatural fandom, I’ve come to notice a bit of a division — namely the extremely enthusiastic fans of Jared Padalecki (Sam), or as some people like to call them, Jarpad fans/stans. They are a lot more enthusiastic over anything and everything Jared does as compared to fans of Jensen (the “Ackles Army”) or even fans of Misha Collins. As far as they are concerned, Jared Padalecki can do no wrong, especially when he has done wrong… there’s always another explanation for it. They ignore the fact that Jared has doxxed people going on the benders that he started to become known for in 2015, giving enough specific information about businesses and companies that he felt (or feels) has wronged him that the identities of individual employees have been divulged, even if it came with a bit of detective work. They ignore the fact that Jared goes on these benders to begin with, never apologizes, and has gone on these benders for years. The most recent one is the “et tu, brute?” one when he was not in the loop about the Supernatural prequel, galvanized his army of stans and had them raging at anyone and everyone even remotely involved in the fact that he — as someone who currently has nothing at all to do with the show — was not “kept in the loop”. He only “apologizes”, which is once in a blue moon to begin with, after his army has done substantial damage… and he knows exactly what he is doing. He is a grown adult. It is obvious that he knows exactly what effect his words, and galvanization, have on people. It bothers me quite a bit.

And, I mean, there’s the public intoxication bit and the drunken bar brawl Jared had, although we still don’t know if his drink was spiked and this caused him to behave in the manner he did (although he literally tried to evade arrest by flashing cash at the cops, I will mention that much, because that is 100% Jared there).

Don’t even get me started on the maskless jetsetting that he and his wife did to Italy, either.

There is clearly a problem within our fandom, and it is the behavior of the J1/Jarpad stans. I rest my case.

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