Posts Tagged ‘disability’

People trying to justify lack of disability are wild.

Someone literally told me with a straight face, or as straight of a face as they could have hoped to manage, that “just because I can use social media, I’m not disabled, and there are probably jobs that I can find if I try hard enough”… or something. (One of my friends was as surprised as I was at this and inserted their own $0.02 into the matter, at which point the person who said this didn’t even really bother to engage them from my own understanding, because the exchange took place — wait for it — online, behind a computer screen, where the person could ironically say these things behind the veil of anonymity. Isn’t that how it always is?)

I told the person that I would continue to take advice from my care team, reminded them that the lights on my section of the house are kept dim, that I am “not always at the computer”, that my computer runs f.lux with Cave Painting selected (which is the least bright setting), and that I actually wear sunglasses in the house as necessary, and yes, until I found out that Zenni Optical now makes sunglasses in my prescription strength, that actually meant over my glasses some of the time. Aren’t these people wild, though? So desperate for people not to be disabled because they can not stand the idea of these people getting “free handouts”, even though these are benefits and services very often needed for these people to survive…

It’s almost always conservatives who say these things though, and more often than not religious ones.

Many of us would work if we could, because to stay eligible for these programs really is difficult. We would.

Hell, to actually become eligible for the programs in the first place is sometimes a hop, a skip, and a jump.

I can finally get prescription sunglasses, everyone!

I found out that I can finally get sunglasses off of Zenni Optical.

This is going to be great for my migraines.

Before, the lens strength only stopped at -6, and my right eye was -6.75 at last checkup, which meant that the lens made would not be strong enough to bring that eye to 20/20 vision. Strangely, they made single vision lenses that weren’t sunglasses in that strength, but… not sunglasses. So after I do get around to getting my eyes checked (I was actually going to do it when the coronavirus hit, and then decided to wait on that), I can get sunglasses in a strength that fits my actual prescription! This means that I can wear them whenever I need to, which should also help cut down on the frequency and severity of my migraines. We hope. They can’t actually hurt them, anyway… and that’s the most major thing. I’ve been looking at some of them on the website (it’s a shame that my pupillary distance is a bit small, or else my first two choices would have worked and would have been great, but it is what it is here, isn’t it?), so I have some picked out in my head that I might like to choose from. I’ll go from there once I get my eyes tested and can also get a new pair of prescription glasses if my prescription has actually changed. But seriously, this is going to be really great!

My head hurts. But when does my head not hurt?

Because my old neurologist moved to a new hospital in another city that was too far to commute unless I could not find another neurologist in this area that took my insurance, I had to begin seeing another neurologist. So now I have to play the game of “proving to this one that my migraines are actually as severe and long-lasting as I say that they are”. I’ve been put on another medication that is meant to reduce frequency and severity of migraines, which I’m supposed to try for two months unless we find out sooner that it is exacerbating my asthma — this type of medication has a low risk of doing that, but if it does, I discontinue it. I suppose we will be finding that out in the coming weeks since I just finished a low and brief course of prednisone (since we are in the midst of a global pandemic and I want to have some semblance of an immune system in the event that I am actually exposed to the coronavirus, although I am actually surprised that I have managed to luck out thus far and… not be, or at the very least, not catch it, but that might be due to mask wearing and more frequent handwashing as recommended due to the nature of this).

More doctors need to take patients seriously when they actually try to advocate for themselves, shit.

I’ve been in the migraine game long enough I definitely know what does not work for me at all at this point…

At this point I may just ask for a referral to the local pain management clinic and let them oversee my care.

I think I’m pointing out the really obvious here.

I love the fact that I’ve gone through three neurologists in… how long now? And, of course, I can’t help any of this. One of them didn’t come back from maternity leave as she had originally planned to, and the other one has gone through three different hospital affiliations in a really short period of time, the third of which putting him so far away from me that it was absolutely not worth keeping him as my neurologist (since that would have been an hour and a half commute one way, only being worth it if there was no neurologist at all in this area that took my insurance). This will probably mean that my plan of care will change yet again, because the previous plan of care involved doing an ambulatory EEG at home, and it’s going to make it a lot more difficult to return everything that I need to return if I have to commute twenty minutes to do it — that’s a lot better than an hour and a half one way, but still. Scheduling. Commuting. All of that. Seriously now…

I also continue find it nearly infuriating that Facebook protects, in no particular order, able-bodied, Christian, white-passing men on their platform, and any dissidents against any of those are easily silenced in the form of comment and post blocks for increasing lengths of time. They also seem to like to silence anti-vaxers by making the reporting system incredibly easy to game and will not actually do anything about it to improve the reporting system. The fact that they let a convicted murderer (Jake Eakin) use their site is also concerning, especially because he is known for posting Facebook Lives of him “ministering” in front of facilities like Planned Parenthood buildings, and in 2018 one of them — so I’m assuming that this means all of them? — issued him a trespass order that he continues to violate with stunts like this, video taping staff at one of the facilities, which meant that police had to get involved. Now they seem to be litigating against him, and he continues to “minister” (read that as: scream in front of) them, while they are actively litigating against him. He also posts pictures that are supposed to be graphic and violent of “body parts after abortion” that a lot of people can report that Facebook refuses to take down, but he and his followers can massively report dissidents’ comments on his page and get them silenced no problem. So it’s clear who Facebook protects: someone who will gleefully toe the line, or flat-out break the law, “for the pre-born”, but not people who, you know, don’t actually break the fucking law. Okay. Cool. Make it extremely obvious here.

Also: I think the original massive appeal of Animal Crossing is wearing out, at least for me, just a little bit.

If it’s not one thing here, it is another.

Apparently the new hospital that my neurologist switched to… is no longer the hospital that my neurologist is working at. Or, I guess I should say, my former neurologist. He only worked there for six months (or, if you actually take the time to look at a calendar, less than six months, which makes this whole thing worse) before switching to a new hospital that is far enough away from where I live that it is not even worth getting a referral to continue to see him, because the commute is an hour and a half one way. It would literally only be worth putting the planning, time, and effort into that if there were absolutely no other neurologist in this area which took my Medicaid HMO, which still makes me glad that I switched HMOs when I did because otherwise that might actually have been the case… I can see one of the neurologists that works in the hospital twenty minutes over from this city, which isn’t the most ideal, but it’s a lot better than the alternative of that, let me tell you. I got a call from that hospital yesterday to let me know that my appointment with him had to be canceled for that reason, and to set me up for a visit with one of their neurologists at that hospital.

But seriously, if it’s not one thing it is something else. I’d just like to be able to keep seeing a neurologist…

Since I have the chance to post before bed…

I would be gaming more if I didn’t have… well, migraines. But the good news is that I see my neurologist at the end of the month to get refills on the medications of mine that need refills, and I tell him which medications of mine are no longer therapeutic and no longer work in the hopes that my medication regimen can be altered to make them more therapeutic. I already know that for reasons that I will be mentioning in this blog later, as soon as we can have it ordered and insurance approves it, I will be wearing an ambulatory EEG — my goal is to wear it “until we catch what we need to catch”, so I’m hoping that insurance actually lets me do that. I’ve never done an ambulatory EEG, and what we need to come up I don’t want to have hide.

I’m hoping that the pandemic doesn’t stall insurance approval of that request, and that my new Medicaid HMO actually approves that request. There’s also the possibility of having another CT scan done with contrast, which my neurologist had been wanting my old Medicaid HMO to do for awhile that they kept arbitrarily denying for the most asinine of reasons even though the first CT scan that was done under my first neurologist actually found something that she (and now, my new neurologist, since she decided not to come back to work after maternity leave) wanted to follow up with… I mean, if the initial CT scan actually found something one might think that insurance would approve a CT scan with contrast to find out more about it, and quite possibly subsequent scans to follow it, but my old Medicaid HMO was arbitrarily denying all subsequent requests for more than the initial scan, which was just absurd. So I guess we will see how this goes if my current neurologist decides to put in a request for another scan, assuming he didn’t give up there.

In the interim, I have noticed that we are actually running low in space on our microSD card, although I don’t want to take that out because our Animal Crossing game is on that and I don’t want to run the risk of corrupting our save data given that we have gotten fairly far in that game. I have heard horror stories…

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