Soon, I will have a hearing with an administrative law judge to see if I can get approved for disability benefits… again. I’ve been told by friends of mine who are more familiar with the process (yes, the process) that the best thing to do is to put in applications, and advance them to hearings, until I am eventually approved, because Social Security wants people to give up and stop applying for benefits even though they are disabled and should not have to fight as hard as many of them do to receive benefits that they are otherwise entitled to. To make it easier on myself, I’ve begun to keep notes on my computer to remind myself of things that I want to say at my hearing even though it will be over the phone due to this pandemic. This is the same judge who has already denied me once when I put in an application for disability with my asthma as my primary disabling diagnosis… now, at the advice of my second neurologist, I’ve put in an application with chronic, intractable migraine disorder as my primary disabling diagnosis. If she remembers me, which she may, she will probably find some reason to deny me. I’m willing to play the game of putting in applications until I am eventually approved, as one of my friends’ mothers had to advance applications to a hearing four separate times to get them approved for disability benefits when they were a child on something that should not even have had to go to a hearing… that was how obvious this disabling impairment should have been to Social Security when their mother applied for them, but I digress. Seriously.

Another one of my friends said that they “deny, deny, deny” hoping that you pass away for people whose disabling conditions run the risk of death so that they do not have to pay out on any benefits. And I mean, I can get behind the deny, deny, deny part since that’s been what has been happening to me right now. I’ve been getting contradictory reasons for denial on my migraine diagnosis alone. Personally, I’m still trying to figure out how someone with between fifteen and twenty “migraine days” (yes, days) lasting between four and twelve hours who can’t even engage in hobbies that she wants to engage in to the extent that she wants to engage in them in can work, but whatever. Maybe if I keep putting in applications they’ll get it…

This is the closest that I have come thus far in this entire blog, aside from writing about… various experiences that I have had with attempted religious indoctrination as they relate to Bub’s father’s family, in writing about specific experiences with people, but I felt like they had to be addressed in the way of disability advocacy: the expectation that non-disabled, or sometimes even other disabled, people have in expecting disabled individuals to “tone down the disabled parts of themselves” in general, to “act less disabled” in mixed spaces, and not to talk about the parts of their lives that have to do with their disabilities, even if being disabled “takes up a large part of their lives” and they are proud of being disabled. Like I’ve said, this seems to be something that society does in general, whether it is being done by non-disabled members of society or even disabled members of society who do not feel that they are “as disabled”, who have better passing privilege (the ability to be seen as non-disabled by society if and when they want to be, or simply to “turn off” being seen as disabled to their advantage), or who are not as proud of being disabled as the disabled person in question. I’ve noticed that this intersection can also sometimes occur when the disabled person in question is a member of the disability advocacy community, or “disabled community”, in general.

I do not like having to “tone down the disabled parts of myself”, as I feel that being disabled is an important and integral part of myself. I can not be myself without being disabled, and I should not have to expect to “be the non-disabled part of myself”, because that is a large part of my identity. If I were not disabled, I would not be the person that I am. If me being who I am makes you uncomfortable, that is something that you need to reconcile with yourself. That should not be something that I need to “tone down” in myself to make you more comfortable with me. I should not be expected to “act less disabled” in mixed spaces because there are non-disabled individuals present, because what sort of standard does that set in the era that claims to be all about social justice? Not a very good one, I’m afraid. Disability is not, and should not be, something that you can “turn on and off” to make other people’s lives easier. If that is something that I feel I have to do to make a group of people’s lives easier, maybe I need to consider how much time I spend around that group of people. Me being disabled is simply me being myself. If someone can’t tolerate that or doesn’t like that, then they need to tell me that they can’t tolerate me and that they don’t like me. It’s just that simple.

Neurological medications:
Lisinopril, 5mg once daily
Naratriptan, 2.5mg up to three times per week
Nortriptyline, 20mg once daily
Olanzapine, 10mg once daily if needed
Promethazine, 25mg once daily if needed
Trokendi, 200mg once nightly
Zomig dissolvable melt, 5mg up to three times per week

Respiratory medications:
Albuterol, two puffs inhaled up to every six hours as needed
Albuterol, one vial nebulized up to every six hours as needed
(for some reason, this was changed when I began filling recent scripts)
Claritin, standard dose
Symbicort, two inhalations twice daily
Singulair, standard dose

I continue to be off of prednisone right now, which I chalk up to being in the middle of a pandemic.

Other medications:
Depo-Provera, taken every ninety days

Neurological medications:
Lisinopril, 5mg once daily
Olanzapine, 10mg once daily if needed
Promethazine, 25mg once daily if needed
Trokendi, 300mg once nightly (200mg + 100mg pills)
Zomig dissolvable melt, 5mg up to three times per week

Respiratory medications:
Albuterol, two puffs inhaled up to every four hours as needed
Albuterol, one vial nebulized up to every four hours as needed
Claritin, standard dose
Prednisone as prescribed not during the pandemic unless really needed
Symbicort, two inhalations twice daily
Singulair, standard dose

Other medications:
Depo-Provera, taken every ninety days

Like I’ve mentioned, I am going to ask to be taken off of the lisinopril at my next consult with my neurologist because not only am I not seeing anything beneficial from it, but I have begun to gain some weight from it… and I’m going to ask to be put on an antidepressant since the Olanzapine has surprisingly been helping out.

A bit. For me. All of this is comparative because it is me we are mentioning here. I’m not expecting miracles…

Good news: You can add your EBT card to Amazon so that they can bill from it.
(Well, in my state, you now can, at least. So that’s exactly what I did.)
Bad news: Amazon is so picky about what can actually be billed to your EBT card.
In which case, why bother even using your EBT card to buy from Amazon? Seriously?

Case in point, I thought I would buy myself some chicken chow mein, which happens to be one of my favorite foods. Ironically, I could buy the rice noodles with it. That would bill my EBT card no problem. But the thing that would not bill my EBT card… was the chicken chow mein itself. No retailer that I could find on Amazon would actually bill my EBT card for the chicken chow mein. It almost seems to be an exercise in futility to find actual retailers that will bill your EBT card for the foods that you want to buy. I’m sure that is the whole point.

“Make it so difficult for them to use their card that they won’t actually want to use EBT.”
“This is how we will make them want to get jobs!”