Captain’s log, day 6,666: the right side of my jaw began to swell and hurt. Took prednisone. Hate prednisone. But I’m feeling better. Am still not sure why that happened in the first place but hey…
This month’s appointment with the pain management clinic that I attend did not go well. For some reason I was prescribed less of the pain management medication that works (Fioricet), and I was prescribed… a copious amount of muscle relaxers. I was prescribed these years ago in conjunction with Fioricet and I felt like they helped, but that is not the case this time, so I’ve been (self-ownership of word here) feeling stupid and tired as I stumble into things. I honestly think I’m going to stop taking them, as I’ve been told to take them twice daily as needed, because they are clearly not helping me out at all and I am still in pain. I don’t want to seem like a drug seeker or anything, but we are not yet at a place where I feel like I can indulge in hobbies and interests with the time I have to participate in them without having to work around that by scheduling doses of medication and wearing 80% amber-tinted sunglasses. So how do I speak up here?
At any rate, sunglasses and all, the boys’ all-in-one computer is almost fully loaded! I will then defragment the HDD drives, which are thw two external drives currently storing the majority of Bub’s games, and at that point I think I will have at it. I might bring up Among Us, music and all, to see if Bub runs in here squealing.
Not too long ago, someone decided to go through my Tweets on Twitter (why do you do this to people you claim not to like? I only read what you have to say because you insist on mercilessly doing it to my friends, screenshotting everything they say that you may not like… I’m surprised no one really turned the tables sooner) and feign offense to me making reference to being autistic. Professionals in the field have repeatedly stressed that self-diagnosis — or in my case, diagnosis by way of Internet and many autistic adults repeatedly telling me that they are sure I am autistic — is valid, because there are many barriers to adult diagnosis and diagnosis in general that might make it so someone never formally pursues a diagnosis. In my case, I feel that I don’t need additional accommodations or supports for being autistic that I can’t already give myself, and I do not reject the opinions of the many autistic adults that I have spoken with over the years that have told me that they see me as being autistic as well. This has been something that has gone on for years, which the person who feigned offense at one particular mention of it on my timeline would have known if they had gone through more of it, but I digress. Growing up, my mother — my primary caregiver because of the sort of work my dad did — was repeatedly told that I was neurodivergent, but among many other things, she refused to permit it to be worked up. Were it not for the fact that she literally neglected me as a child (I was fed and clothed, but not much else), I would have been formally diagnosed.
I find it amusing that when things these people — members of the Supernatural fandom, which is why all of this stays online — take alleged offense at (“she drugs her kids”, referenced in the post that I made about Bub’s medication regimen recommended by the whole of his care team, this) or the fact that I do not dispute what many autistic adults have told me, they stop talking about it. I also find it humorous that they do not appear to be frequent readers of my personal blog (I have a tracker, but it’s not specifically for that purpose), instead choosing to block me on Tumblr and gloat about it… when I only use Tumblr because friends of mine have accounts there. I reblog a few things in the morning, read individual Tumblr accounts of friends of mine who regularly write, but I seldom compose blog posts in there. But this is why fandom stays online for me.
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.
I found an internal e-mail address for HHSC’s family violence coordination unit that proved to be extremely useful, e-mailed the copy of the good cause form to them that the child support office continued to have on file, and expressed confusion to them about all of the conflicting things I’ve heard from… well, everyone responsible for not working these cases. The individual that I began to correspond with about this over e-mail was as confused as I was why HHSC “lost” the good cause waiver, why anyone was expressing concern that it was for both of my cases, and why the child support office was (or has been) attempting to work the cases. He said that he was looking into it “to see why this was even happening”, so it’s good to finally have someone in my corner who sees all of the confusion in this for precisely what it is: confusion.
If I could work, I would. There are many jobs out there that I would like to do… if I could do them. I made peace with being disabled several years ago, and it was a process. I know my body and I know my limits better than anyone, and I would appreciate it if more people actually respected this in the long term…