Posts Tagged ‘disability’

09
Jan
2022

And prednisone is still out here in these streets.

categories: personal, television shows; word count: 438 words

I’ve finished up one of the antibiotics which was for fungal infections and only lasted a few days. Now I have to finish up the other antibiotic, which runs the gamut lasting about as long as these things tend to last, and I have to finish up the low dose of prednisone that both of my doctors want me to end up on (followed by me never touching prednisone again unless it is an imminent, and I mean imminent, matter of life and death… and even then, assuming that I have any choice in the matter by way of having it charted in my medical files, I’m going to want something else first if I can be given something else). There actually seems to be some improvement with the gum and jaw infection that prednisone caused, although I need a lower dose of prednisone to cause the swelling on that side of my mouth to go down and stay down. But for some reason I’ve been having worse migraines since all of this started, even (especially) for me. Par for the course, eh?

At some point I’m going to need to post something up here about “Thasmin going canon” since I’ve been a fan of Doctor Who for quite awhile. It’s actually kind of surprising that I haven’t so far. I got into Doctor Who with the 2012 Christmas special and haven’t looked back. The fandom is also a lot less vitriolic than the Supernatural fandom, and if all fandoms were even remotely like this — I’m aware that most generally are with minimal “fandom drama”, but some of them are not — I might consider going to a convention or two, or at least think about it, but I honestly think that with things the way they are in general right now my best bet is to continue to keep all fandom activities on the Internet (even the good people that I’ve met through them) and not allow them access to my real life. As it is, my real life is markedly different from my “fandom life” anyway to the tune of the fact that I maintain separate social media accounts for fandom-related activities and real ones, excluding Facebook where I run filters on everything so that people I know in real life very infrequently cross paths with those who I know on the Internet, and at that, those who like varying degrees of the favorite things that I do. I may talk about liking Supernatural on my Facebook page, but I scarcely mention anything related to the fandom… or fandoms in general, so no, it’s not “just Supernatural” here.

04
Jan
2022

Single-dose prednisone too has taken the L, folks.

categories: personal; word count: 465 words

The last time that I wrote about prednisone it was in the context of… not wanting to take it again due to severe side effects, but then I was presented with the opportunity to single-dose myself at infrequent intervals (no more than two consecutive days) if that was something that I wanted to attempt. Knowing that prednisone has significantly helped with migraine pain and moderately helps out with symptoms of bronchial asthma that are severe enough to warrant consideration of its use, I wanted to give it one more try before I gave up on it. And for awhile, this seemed like something that would work. It allowed the bad side effects of prednisone that I need to avoid to become balanced, or more manageable, while letting me experience some of the effects of prednisone that we wanted to see happen… but that didn’t last forever.

Or for even that long at all. Comparatively speaking it wasn’t even that long.

Even on the lowest possible doses of prednisone not taken every single day but only as needed, I was still getting sick and having side effects bad enough to make the medication intolerable. In spite of lowering the dose and decreasing the frequency, I was still coming down with more frequent opportunistic infections than I should have been, and this is said as it should simultaneously be taken into consideration that I have been taking oral steroids as needed since 2012. I know how important it is to stay clean, to frequently wash your hands, to mask up and not to get too close to people when it can be avoided, and I was expertly juggling these requirements until prednisone became too much for my system to take at any regimen. As far as decreasing migraine pain goes, I can voice these concerns in the context that this may very well actually open the doors for me to be prescribed stronger pain medication. Triptans do not work for the specific type of migraine that I most frequently, almost always suffer from, and Fioricet was only still tolerable when taken with prednisone as needed for the “worst” of those migraines. As far as symptoms of bronchial asthma go, I can just present to urgent care or the emergency room more liberally in lieu of starting the prednisone that… now can not be started because of all of the side effects that it is giving me even at the lowest possible doses. By presenting early enough in an exacerbation, especially to the emergency room, I can be given other medications that do not have these same risks. It may well be that I eventually have to abstain from taking steroids at all. And I mean, they were useful for awhile, so this will suck, especially as time passes.

07
Dec
2021

I get the weirdest spam comments on this…

categories: personal; word count: 460 words

Meanwhile, I am still continuing to fight the state to get disability. This most recent denial made it evident that the people in charge of deciding whether or not I “am disabled” (hint: I am) did not even read the doctor’s notes that they asked my pain management clinic for on two separate occasions. My pain management clinic has literally been nothing but supportive of me filing for disability, but they make this the most difficult in the world to access with the most asinine rules and regulations that they themselves do not even adhere to. At this point, if my reconsideration is denied, I am seriously consider looking into one of those lawyers that only takes some of your backpay if you win the case — this wasn’t something that I wanted to do because these are more appointments that I’m going to have to make to see the lawyer, and this is something that I’m going to have to put even more time and effort into, but the current system of disability we have is causing disabled people to go without needed care and to die. I’ve actually known (of, depending on who you’re talking about) a few people — as in, more than one — who have died of their disabilities because Social Security continually kept denying them hoping that it could save itself some money by not having to pay out on another case. I knew someone who was diagnosed with aggressive cancer who finally got awarded disability at the hearing level, and then he died of that cancer two days later, which meant that all of his backpay had to be given back to the state. This was money that he had deemed eligible for, but due to disability laws, because he passed away all of it had to be remanded back to the state… which means that they ultimately lost themselves no money by denying him and denying him until his cancer killed him.

I knew someone whose mother had to attend like… four hearings for them, and at the fourth hearing they were approved for disability, but the backpay only went so far back since this was like the fourth hearing.

I knew of someone who died in her sleep waiting for her hearing to come up, having been denied twice.

My second neurologist had to field denials for two of his patients who had conditions that were going to kill them. His nearly exact words to me were, “Lou-Gehrig’s doesn’t get better. You die from it. And the state persisted in claiming that this individual was “no longer disabled”, so they tried to deny his benefits on CDR.”

The disability “system” as it exists in the United States needs to be overhauled, drastically, and soon.

06
Nov
2021

And we have another one, which Facebook removed.

categories: personal; word count: 128 words

Ironic that you would say that, given that my brain is actually two-thirds of the problem here. My primary disabling condition is a neurovascular one. But since you’re not a member of my care team, you don’t get to judge whether my disability is… well, disabling. And I did find it incredibly amusing that Facebook acted on this comment within, again, about an hour of me reporting it, determining that it violated the Community Standards by being bullying and harassing, promptly removing it. Friends of mine, as well as myself, are looking for the employers of these two people that I’ve recently posted about in the hopes that we can report these comments to their job’s Human Relations department. This is literally “fuck around and find out” here.

05
Nov
2021

Another comment, since removed from Facebook.

categories: personal; word count: 182 words

Republicans in this state are obsessed with “proving” that disabled people can work and trying to “find jobs” for them, all because they seethe at the very idea that their taxes go to fund various means-tested programs for a lot of these people. Facebook took down this comment within about a hour after I had reported it, telling me that it violated their Community Standards on harassment and bullying. And again, I am choosing to redact my name but not this individual’s — I am going to make these people own exactly what they say, and if their jobs can be located (assuming that they, the almighty arbiter of the taxpayer dollar, have jobs… wouldn’t it be ironic if they didn’t?), friends of mine as well as myself will be sending unredacted screenshots of these comments to their job’s Human Relations department. Sometimes these departments take these things seriously, as they should, because they are technically reflections on their company’s ethics what with employees of theirs brazenly saying them. This just seems to be a thing that leftists do now… I support it.

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