Posts Tagged ‘disability’

20
Feb
2020

Neurological medications that I am currently on.

categories: personal; word count: 273 words

Since I mentioned this in a previous post, I thought that I would get around to making that whole list.

Right now, I do not feel like triptans help out a whole lot, and would like to switch to low-dose narcotics at some point. Due to the severity of my asthma, I can not safely take any NSAIDs without risking prednisone.

I also require prior authorization for Trokendi and for some of my triptans (it seems Zomig requires it now).

Maintenance medications
Trokendi, 300mg: Anything with topiramate as the active ingredient is almost never without side effects, as I have learned. I take these (200mg + 100mg) at night, which lessens the side effects, and that helps… a bit.

Abortive medications
Fioricet: I find that this one works the best, although one dose is never enough.
Imitrex injections: These are rife with side effects, so I only use these when necessary.
Olanzapine, single dose: These help with really severe migraines, but they make me really tired.
Promethazine/tizanidine: These are for nausea and muscle spasm, respectively, and they are to be taken with whatever abortive medication that I give myself as necessary for each of those symptoms (and they generally are with severe migraines). Although I am growing more tolerant of them, I’m still hit out of the blue with the occasional side effect of tiredness. However, they do help ameliorate those specific symptoms, so…
Zomig dissolvable melt/nasal spray: I have to fight insurance due to prior authorizations on these, and they do help when I can’t give myself Fioricet, but they are not particularly good at ameliorating a lot of the pain.

11
Feb
2020

So far, my reasons for disability denials…

categories: personal; word count: 299 words

· you have a STEM degree (an associates’ in Biology obtained before the onset of any disability)
· you’re intelligent, so you can adapt to work (when my disabilities are all physical)
· “your functional limitations line up with your neurologist’s report on you, but we still believe you can work”
· the migraine aborters actually work 100% at taking all migraine pain away, so I “can work”
· “you may have some limitations” (ha), “but you can adapt to work” (and absolutely no work is listed)

I had a friend whose mother had to apply for disability for them four separate times while they were a child, just to get them approved. That was four separate applications that she had to put in. Another case that I heard about was the friend of several friends waiting for a hearing after having been denied twice, just to die in her sleep. And I read about someone who had to advance it to a hearing for leukemia, at which point they were approved, but they died soon after because they could not start therapy for their cancer in time to save their life. This is literally what disabled people in the United States have to deal with. They have to put in application after application, or advance it to a hearing and wait up to two years to get in front of an administrative law judge, hoping that they can hold their heads above water while they do, also hoping that they don’t actually die before disability benefits are granted. Like I’ve mentioned before, 13,000 people die per calendar year here because they actually are disabled and they kept being denied benefits. That is one hell of an “oops”. I’m starting to think that it’s intentional on the part of this country, a feature, not a “bug”.

01
Feb
2020

This is a travesty worth pointing out.

categories: personal; word count: 426 words

13,000.

That is roughly how many people actually die every year in the United States because they apply for disability benefits (SSDI or SSI) and are denied, sometimes continuously. That’s thirteen. Thousand. People.

They die for a number of reasons.

Lack of access to healthcare and medication.

Inability to afford housing.

Not being able to buy themselves food.

The list goes on, but I’m sure I’ve made my point by now.

Roughly two-thirds of applicants are denied when they submit their initial application, and a staggering 80% of applicants are denied if they request that Social Security reconsider their application. For those who choose to advance their application for benefits to a hearing with an administrative law judge after this second denial, the wait to get in front of a judge in some capacity can take up to two years in some states, and between half and 60% of applicants have their benefits approved at that stage… so no matter how you look at it, the odds do not exactly appear to be in your favor (although older individuals seem to have an easier time obtaining and securing disability benefits for themselves, and I’m told that children who “age onto the rolls” as adults seem to have a slightly easier time depending on just what their disabilities are).

And some of them die right after getting approved after having literally fought the system for years.

They die because they weren’t able to access the things that they needed in time because they had to fight to get what they were rightfully owed. They count here. Their stories are still important. Just as important.

This may not surprise very many of you given the… political climate in the United States, at least as far as it relates to healthcare, but it will probably sadden and shock those of you who are not familiar with the number, but that is the number. Because people with legitimate disabilities who are not able to work are being denied for sometimes the most contradictory, superfluous reasons, approximately thirteen thousand people die in the United States every year as a result of that, and to me, that is thirteen thousand people (or however many people actually die in the United States as a result of this) too many. I almost want to laugh — and sometimes I actually do — when people say, “oh, you’re disabled, just apply for disability” as though it were really that simple. I’m not sure if the system is intentionally set up to be like this or what. It may well be.

18
Jan
2020

I never thought I would say this, but…

categories: personal; word count: 498 words

My asthma is actually somewhat better now than it was several years ago.

Comparatively, that is. For me. I’m aware that my asthma is also worse than other people’s.

Probably many other people’s if you want to get down to brass tacks and be honest about it.

A few years ago, I was at a place where I needed to take prednisone roughly every month and a half without fail… and there were some stints when I needed to take it every three weeks. It was my primary disabling diagnosis. I got short of breath doing simple things around the house, and any real form of exercise was out of the question. Friends of mine used to joke, with my permission, that I would be lucky to make it to forty… except that wasn’t entirely a joke as much as it was all of us honestly hoping that something would not trigger a fatal asthma attack in me before I actually turned forty years old, let alone anytime soon — in, say, the next several months. I had to have conversations with people that knew me in person about what I would want done if I were to be found unconscious as a result of a severe asthma attack, how far they would want medical professionals to go to attempt to save me (did I want to be ventilated? how long did I want to be left on the ventilator?) if the absolute worst were to happen. It was no big deal that I frequently had coughing attacks and coughed up at least a handful of mucus as a result of them and then could breathe better for a time. But sometime between then and now, something gradually changed. Just a bit.

As my migraines progressively got more frequent, and more severe, my asthma dialed it back. Just a bit.

Almost in lockstep.

Exercise still leaves me absolutely winded, and exerting myself too much is still something that I have to pay for in spades if I actually do it, and I still do have to nebulize fairly frequently, but for some reason, I am not quite where I was at a few years ago. I am still not quite sure why that is. With the black humor that I like to use to cope with just about everything, I like to joke around and say that enough people prayed for me not to die of a fatal asthma attack that now, instead, I have severe migraines to deal with. I managed to live long enough to have another problem to deal with. (And maybe that’s actually the truth.) I’m not at an actual place where I have to worry about whether or not I will need to be intubated as a result of an asthma attack.

It’s still really annoying to have to deal with, but we’re not quite there any more.

Readers who have severe asthma, or any severe, disabling diagnosis will understand what I mean here.

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