Posts Tagged ‘disability’

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.

16
Jan
2020

Prior authorization drills are fun.

categories: personal; word count: 240 words

And by “fun”, what I really mean to say is “attempts by insurance companies to gatekeep patients away from necessary medications, attempting to justify not wanting to pay to cover them”. What happens is:

· your doctor decides that you need a medication, and prescribes it
· that prescription is given to your pharmacy
· your pharmacy attempts to fill that prescription for you
· this script is presented to your insurance for coverage
· insurance denies coverage of this script
· they request that your doctor fill out forms attesting to your need for it
· your doctor has to fill out forms stating that yes, you need this medication
· these forms are sent to your insurance to approve
· if approved, your insurance authorizes your pharmacy to fill the script
· you are able to pick up your medication from the pharmacy

Basically, it’s a really snarky, underhanded, “but do you really need the medication?”.

A few medications that I take require this, and they require documentation that I have tried to take other medications and that they have not worked on me to be submitted… every twelve months.. for my insurance to continue to approve these prior authorization forms (as though these medications that I have tried in the past will suddenly, miraculously work on me one day) so that I can continue taking necessary medication…

To say “it’s a hassle” might be understatement of the year, and we are only in January. But it’s the truth.

14
Jan
2020

Quitters never win, and winners never… uh…

categories: personal; word count: 522 words

Back when I was in high school, attempting to participate in sports while my coaches (and, as it would later turn out, my gym teacher) turned a blind eye to the asthma symptoms that I was blatantly exhibiting, my cross-country team was working on “gearing up” for the mile that almost all of us would “master” running. As it turned out, I would be one of the very few students, if not the only student, that would not ever succeed in running the mile — not only were the symptoms of asthma that I were blatantly exhibiting being ignored to the tune of no one even bothering to tell my parents that I had them or was struggling to perform in athletics or physical education, but during my first, last, and only run, I stopped to help a friend of mine that had tripped over a hidden pit, spraining her ankle in the process. Because both of us had stopped, we were disqualified. My cross-country coach insisted that all of us would “be successful” in running the mile if only we would get over the “mental block” that must have prevented us from doing it, and it still incenses me that not a single adult in a position of power even stopped to recognize the symptoms of asthma that I had been exhibiting, let alone give my parents a phone call to let them know. As mentioned in previous entries, my parents would not find out for more than a decade that my coaches and gym teachers had either turned a blind eye to them or intentionally ignored them. This was another reason that I just hated my high school…

I say this like I do because one of the things that I had wanted to do, and would like to do if my health would allow it, is run. But it is one of the things that my lungs will, full stop, not allow me to do. There’s absolutely no way that my lungs would ever allow me to do that. They have made it abundantly clear over the years that there is no training, or “getting over the mental block”, to successfully run. My asthma is too severe — especially my exercise-induced asthma — to oxygenate my muscles to allow me to run. There absolutely is no training my lungs, my body, or my mind to successfully run any meaningful distance other than an incredibly short one if I have to grab Bub if he makes an elopement attempt. There are no marathons. And that’s something that I have had to make peace with, time and time again, every time that I think about it. But again, for my coaches — in the positions of power that they were in — not to have done something about my asthma, even if it were to recognize that attempting to participate in athletics was not something that I should do, still angers me to this day when I think about it. My school really should have done better.

There was no “mental block” to get over when the problem was a disease that was never going away.

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