Posts Tagged ‘advocacy’

21
Feb
2021

Since I promised that post, here goes nothing.

categories: personal; word count: 330 words

I had my first seizure in April of 2019 when my mother was still alive.

It woke me up from deep sleep, and I went through the whole aura, seizure, and postdrome.

Since this was my first seizure, I didn’t know what was going on and felt like I was dying. It lasted a few minutes, but my sense of time was heavily distorted — to me, it felt like absolutely forever. And symptoms of it left as quickly as it came on, although I felt exhausted at the end of it. For me, the aura often involves experiencing an intense feeling that does not quite match the situation, and the seizure itself feels like my brain is being shocked or an egg that is thrown against hot concrete to cook. I can vocalize during these, although the people that I have vocalized to have told me that I seem “off” having these conversations. I don’t want to vocalize while I’m having them though, not unless I have to, because it feels like I’m taxing the small part of my brain that is completely aware of what is going on. I can also do very basic things during some of my seizures, which perplexes me. Others, I have to wait until it passes. There is no rhyme or reason.

Sometimes I can go months without a seizure. Other times, I have multiple seizures in a month.

I also do not have any involuntary motor movement. However, I am known to hold my head with my hands and rest my elbows on my lap, and the quieter my surroundings are when they can help it, the better. Almost all of the time I still feel the peculiar emotion that was present during my aura, although by the end of the seizure my feelings have returned to normal. Being on Gabapentin for migraines has really helped me out.

Another feature of my seizures are racing thoughts, which also completely stop when the seizures stop.

20
Feb
2021

This is why I am not playing Cyberpunk 2077.

categories: personal, RPGs, survival horror; word count: 188 words

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?

30
Jan
2021

My history with depression to diagnosis.

categories: personal; word count: 423 words

To delineate before I get further into this, I did not experience postpartum depression with either pregnancy.

It can be safe to say that my body did not, and does not, like even the idea of being pregnant… and although I would not trade either of my sons for the world, my body’s abhorrence at pregnancy goes beyond the normal difficulties that someone who is or can get pregnant might face. In my case, depression was more subtle and did manage to sneak up on me before I knew for a fact that it was actually depression. After my youngest son’s birth, I found myself participating less in activities that I normally would, such as hobbies and interests. This was even when I could do so or would have had the time to do so. I kept making excuses about how busy I was, having two young children and all, but my difficulty engaging in these hobbies and interests even after both boys had gone to bed for the night continued to grow in intensity until I was nearly always making excuses not to do the things that I formerly enjoyed and had quite a long history of liking.

This was the primary symptom for me, as well as not really having any “high moods” to speak of.

When my old neurologist put me on 20mg nortryptline to see if that would help with my migraines, it had a positive effect on my anxiety levels and my mood. I made an appointment to be seen by my primary care physician to discuss this with him and have him rave him raise the dose, which he did to 50mg and then at my request to 100mg. I will actually be trying the 100mg the next time I can fill for this med. Taking this medication, I’ve been less anxious, and my moods have generally been markedly more positive than they were rather than “flat”. In addition, I have been able to sleep better than I was. I’ve also begun to want to resume participation in hobbies and interests of mine, particularly once the kids are in bed for the night and I can have some “me time”. I don’t see a problem with depression or being candid about it, and I do wish that there weren’t this stigma around mood disorders or accessing care for them. In the United States alone, it’s still an extremely bad thing in certain circles (“you can just tough it out, you should just tough it out”, so on).

23
Jan
2021

These things should surprise, well, no one.

categories: personal; word count: 285 words

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.

19
Jan
2021

Since it needs to be said, again from the top.

categories: personal; word count: 365 words

· I make my disabilities fairly obvious, at least as far as they relate to certain things. This includes the effects that medication may have on me. It is not my responsibility to make my disabilities more palatable or your life easier because you can’t be bothered to remember that I am disabled or how it may limit me, especially when I’m as forthcoming about my disabilities as I am. It is not my job to simplify your life “dealing with me”.

· Although I understand that some people may not like children (and that these people are usually the ones, through conscious action, who have none of their own), this does not give you the “ability” to censor my children from my life. If you think that I am going to be “me without children” to make your life easier, you are mistaken. My children, and being a parent, are an important part of my life, even though that role is one of many facets of my life. I am not going to hold them at arm’s length to make someone’s day, or life, easier. There is a difference between acknowledging that someone may not like children or parenting as much as someone with children, who is a parent… and practically wanting said children to be held at arm’s length.

Six months, or even a year, ago, I would have had a difficult time writing a post like this. I wouldn’t have wanted to offend anyone, and I might have (probably would have) toed the line giving people what they wanted to make interactions with them easier out of concern that I might lose their friendship if I did not. But as I’ve gotten older, I’ve begun to advocate for myself more mouthily, which might have been a long time coming given how I… didn’t do it for as long as I did. I’ve also come to the realization that there are certain things that, if persisting, should disqualify me from a friendship with the people who insist on doing them and that I am no worse for the wear in the event that this occurs. Take me as I am or don’t. It’s your choice.

17
Nov
2020

Soon, I have another disability hearing. Go me.

categories: personal; word count: 352 words

In my spare time, I’ve been stylizing our YouTube channel in the hope that at some point I can get it off of the ground. I’ve been uploading most of the videos that I posted on Facebook to it in the event that, for whatever reason (and trust me, there are several) I do decide to leave Facebook, that way the videos that I’ve taken of my kids are stored elsewhere… and I’m also backing up all of the pictures that aren’t on Instagram and posting them on MeWe for that same reason, now that I know that enough of my friends use it that it’s not a waste of time to have an account. One thing that the site has going for it is that it looks nice and is easy to navigate. Now more people need to move off of Facebook and onto it, or off of Facebook and onto just about any site that isn’t owned by Facebook. The entire point of the process here is to get away from Facebook…

In the interim, I’m continuing to fight for disability benefits with chronic, intractable migraine disorder as my primary diagnosis and my asthma as… something that exists and is there. I have literally heard “you’re smart, you can adapt (to other work)” so many times that if that alone could induce vomiting, it would. My gaming backlog has only increased by leaps and bounds because I have to be careful about using electronics, those being a huge trigger for… wait for it, migraines. There are things that I want to do that I can’t do when I want to, or even at all, because of my migraines, so this “adaptability” is bullshit on the part of the people that want to insist that I am capable of adapting, let alone to work. I expect that I will have to continue to fight for disability benefits and I will be pleasantly surprised if I do not at just about any point.

But honestly, I can see why some people give up. They’re forced to do so through a dehumanizing process.

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