Posts Tagged ‘disability’

This is why I am not playing Cyberpunk 2077.

When Cyberpunk 2077 came out, I was initially excited to play the game.

However, that was short-lived when I found out that a certain part of it caused people to have seizures.

I am epileptic myself, although I retain awareness and consciousness during all of my seizures, and I have no involuntary motor movement. Even though I do not appear to be photosensitive, it wasn’t — and isn’t — a risk that I was (am) willing to take, especially if I had a seizure that… laid me out, so to speak. Even though that was almost immediately patched and friends of mine have told me that that section of the game is a lot “tamer”, I still haven’t played our copy of Cyberpunk 2077. I’m waiting for a lot more information to come out about it, especially that part of the game. My seizures feel like something is shocking my brain, like my brain is an egg thrown onto hot concrete, immediately cooking. If I can avoid them, that would just be awesome.

That also reminds me that I would like to write a post all about my epilepsy since why not?

So apparently I have a new diagnosis now, fun.

In addition to having chronic, intractable migraines, I have occipital neuralgia now.

This was, as the kids like to say, “sussed out” by the location in which my migraines almost always start. Apparently it’s not a common diagnosis or even a common thing, although I am not surprised to have been diagnosed with… wait for it, something that isn’t common. This would explain why triptans do not really work on me, or they only work a little bit. The pain from occipital neuralgia can not be ameliorated by triptans because that pain is not actually migraine pain, even though I have both diagnoses at present. However, it can be lessened with targeted Botox shots as well as steroid shots along the location in which the nerve travels. I am open to both of these things if they can in any way meaningfully help. My pain management clinic is actually trying to get Botox injections approved for me, so I will see how that goes. It has taken awhile, but apparently these things predictably do. I will just bide my time here and wait, heh.

I mean, I’ve put the effort out here, folks.

Soon I may be able to get the flu shot, which is useful even coming up to early February.

Key word, though: soon. And possibly, since taking prednisone for asthma contraindicates me while I am actively on it and for four full weeks after the date of last dose. Over the course of this pandemic I have honestly tried as hard as I could to stay off of prednisone, and I have had varying degrees of success depending on where in the year we have been at. I have certainly put substantially more effort into this.

If I can stay off of prednisone for more than four weeks, I may also be able to get the COVID-19 shot expedited due to the severity of my asthma since I’ve been told that I fall under one of the classes required to get it sooner than the general adult population… 1B, or something to that effect. I’m willing to get all recommended vaccines as long as I can tolerate them in that I am not, for whatever reason, contraindicated from them. Almost everyone else that I know is current on all of their vaccinations, at least the recommended ones, so I feel somewhat confident being protected by herd immunity… even though I’m aware that as various people enter my “bubble” when I do have to leave the house that they, for whatever reason, may not be up to date on their vaccines. I consider it a blessing that all I have to get is the annual flu shot and, whenever I am able to, the COVID-19 vaccination. Looking at you really hard right now here, prednisone.

These things should surprise, well, no one.

I managed to get the key that I mentioned in an earlier post working with some tape.

It’s not the best possible fix in the world, but under circumstances it will do until it can be repaired.

Right now, I know that the two most likely “contenders” for repairing it are to buy an individual key or to buy a new keyboard and have someone who knows a lot more about that sort of thing be the one to install the new keyboard onto… well, this computer. And in other news, my neurologist’s response to finding out that I consulted with the local pain management center here and was taken on as a patient was to passively-aggressively chart in my patient file. There was a reason why I chose to transfer that care, she is that reason, and my care will be completely transferred. I’ve actually stopped taking the medications that she prescribed, weaning off of them where appropriate, and in a twist that should surprise absolutely no one who might be reading this… nothing that she had prescribed me curtailed my migraines even modestly. There was still the whole quality of life issue to be had if I had remained under her care, taking medications that did not bring me more than slight relief, not being listened to when I vocalized these sentiments. At least the local pain management clinic listens to me and prescribed me Fioricet because that medication works…

As mentioned in previous posts here, I shouldn’t have to keep asking to be allowed to be in less pain. I shouldn’t be having to settle for pain to begin with or “learning to live with it”. No. I’m in my mid-thirties here.

None of this should surprise me, but…

I am continuing to wash my hair with water as necessary, having decided to eschew traditional shampoos and conditioners so that my hair can remain as bright as it initially was when I first dyed it… and because shampoos strip one’s hair of the natural protection that oils and sebum gives it, just to turn around and attempt to put some kind of protection right back on it with conditioner. I have found that frequently brushing one’s hair really helps make sure that the scalp’s oils are spread down the entire length of it, and I’ve also discovered that my hair is wavier than even I had first estimated, presumably because it is also soft and regular shampooing was damaging the natural waves because it was making it to where my hair had more of a difficult time holding a wave. Now granted, my hair has never been able to pass for straight, but this actually surprised me more than I thought it would. And at the same time… it didn’t surprise me at all.

I am now doing pulmonary function tests every six months since I am “stable”. As in, the severity of my asthma isn’t expected to change such that more frequent visits are warranted. These visits include the six-minute walk each time that I do them, although it’s a bit cramped on the third floor of the building that my pulmonologist now works in. But we make do, and my doctor gets the numbers that he wants from me…

I may also ask my primary care doctor (physician) to raise my dose of nortryptline from 50mg to 100mg, too.

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