Being disabled does not make me immoral

October 23, 2020

“Who came up with this system of the haves and the have-nots anyway?”
“That would be the haves.”

I can’t remember where I heard that, but it feels appropriate right now. That’s because I am frustrated not only by my lack of income, but especially by the scrutiny my measly income receives.

A few weeks ago, the New York Times broke a story that revealed Trump paid almost no taxes. Despite his huge amounts of money, he found ways around his obligations. Maybe the IRS took a close look at his taxes and determined it was all legitimate. Maybe not. Either way, he got away with it. And he’s far from the only one.

Meanwhile, I am receiving Social Security, housing, food, health insurance, and other benefits which allow me to sort of almost just about but not quite cover all of my basic bills. Of course, they don’t allow for “extras” like a vacation, big car repairs, a new used car when mine eventually bites the dust, or medical treatments that aren’t covered by insurance, and even without those things the money isn’t enough. So of course the solution is to try and earn money. Yet I am under such scrutiny that this is nearly impossible. And even without earning money, just living life is far too complicated because of the scrutiny.

The benefits cliff is not a new topic. It’s counter-intuitive to helping people get off of benefits. There’s an all-or-none setup that doesn’t work because my health is not all-or-none. Some months I can do more, some months less. Why should I be punished for that? But I digress.

I am not talking about the absurd benefits cliff itself, but about the intrusiveness of the entire setup. It is invasive and insulting.

I no longer have any financial privacy. Multiple benefits offices have me fill out detailed and intrusive forms. They look not only at my taxes, but also at my bank statements, including PayPal and Venmo. They question every deposit. For some, I am required to provide proof of the purpose of each deposit. When I can not show a cancelled check because my bank no longer provides these on bank statements, I must then pay to get them from the bank. When a friend gives me money, the office expects a notarized statement as to its purpose.

Seriously? I’m supposed to ask friends and others to notarize a statement about why they paid me?!? And about about strangers who send me $50 via PayPal or Venmo for buying some random thing that I’m selling? This is completely unrealistic, not to mention embarrassing! How exactly am I supposed to ask for this?

Example: “Do you remember how seven months ago I paid for that gift for Susan? And you know how you reimbursed me for your half the next day by Venmo? Could you give me a notarized statement that you weren’t paying me for anything but were just reimbursing me? I’d rather not say why.”

Yeah, right.

Then there’s actually trying to earn money. The limits for what I can earn without losing my disability benefits are really low – lower than my actual benefits. But long before I hit that number, there’s another number that’s scary: the one that triggers greater scrutiny from the government. Technically, reaching that number every month shouldn’t be a problem. After all, I wouldn’t be earning enough to get kicked off benefits. Still, we all know that the last thing we want is more attention here, especially these days, so I want to avoid getting anywhere near that number. Why give prying eyes more reason to examine me?

I am hugely resentful. Why can’t I simply try to earn as much as possible? Chances are I wouldn’t earn enough to get kicked off benefits (every time I have tried to work in recent years, I got a lot sicker and had to give up) but I would sure like to try and earn enough to buy some new clothes! And why can’t I simply live like a normal person who lays out the money for a shared birthday gift?

I get that the government wants to avoid fraud. They don’t want me getting benefits while also receiving $5000 per month from various friends and not reporting it on my taxes. But really, what are the odds of anything like that happening? Are there really going to be so many people on benefits who find a way to get enough money that doesn’t have to be reported on their taxes that it justifies this level of scrutiny? Would it really justify the salaries of the people paid for this scrutiny? Meanwhile, they make me explain that the $50 deposit into my checking account was a Chanukah gift from my aunt and no, I don’t wan to ask her for a notarized letter confirming that.

Now, let’s say someone was being deceptive. They received benefits they shouldn’t receive. The average SSDI payment for adults in 2020 is $1258 and the average SSI payments are $783 for an individual and $1175 for a couple. Meanwhile, we watch rich people and companies avoid paying millions of dollars in taxes. One rich person’s yearly taxes, if properly paid, would probably cover the lifetime disability benefits of quite a few people.

A lot of people find it unfair that they pay more in taxes than rich people do. I feel the same. But at the moment I am pissed that they get away with it while I need to justify every penny. Where is the scrutiny? I find it hard to believe the government couldn’t catch these folks if given the resources. Wouldn’t it make more sense to devote the salaries of staff to catch someone who owes millions, instead of focusing on disabled folks, the majority of whom are just trying their best to cover their bills?

A lot of people argue that the big difference is that disabled folks are living off of government benefits, so the government has to be sure that money isn’t being misspent. Uh huh. Tell me, do rich people not use government services? I’m pretty sure they use government infrastructure, their businesses benefit from people who attended public education, many of their businesses thrive because they pay such low wages that employees must use food stamps, and so much more. Many of them attended public school and some were even on food stamps themselves in the past. They benefit, even if their line is more squiggly than my direct one.

I am not suggesting that benefits should be handed out without any follow-up but maybe, just maybe, our current system goes absurdly overboard. I think we need a system where I can be reimbursed for laying out money for a birthday gift without having to jump through hoops.


Foiled by my supposed medication

September 23, 2020

For a short time, I thought I had finally fixed my sleep problems. And I had. Until it all went to hell.

My entire life I have been wide awake at night. It didn’t matter how tired I was, I would suddenly be awake. Mornings were horrible. I remember my mother’s struggles to get me out of bed from a young age. There were years of snoozing the alarm, and the ensuing difficulty getting to school or work. I never understood how people manage to do anything before work in the mornings. Go to the gym? Wash dishes? Clean? Read? It was all I could do to get on clothes, eat something, and get out the door.

When I developed sleep apnea, I began seeing a sleep specialist. In addition to treating the sleep apnea, he figured out that this problem of mine was due to a circadian rhythm shift. There’s nothing wrong with this as far as the body is concerned. It is only a problem because we live in a 9-5 world. What to do about it? He had me use a blue sunlamp for a short time in the mornings. That definitely helped me to feel more alert in the mornings. (And as a bonus, I am now much less bitchy when my seasonal affective disorder kicks in every fall and winter.) Still, I was sleep-deprived because I wasn’t going to bed at a reasonable hour. I wanted to, but I was too awake.

This worked so well. I wish they still made it!

Then the doctor introduced melatonin. Most stores sold 3mg tablets or more. He had me start much smaller. He recommended a site that sold 0.3 mg tablets. I took that it knocked me out, but I had a hangover effect in the morning. I cut it in half. That was better, but I was still tired in the morning. I cut it into quarters. Ah, much better. It took a lot of trial and error, but finally I found the right dose and the right timing. If I was out then I had to skip it (which always led to too little sleep) but most nights I was home, and I took my 75mcg melatonin every night. It wasn’t perfect, but it helped a lot.

Then I started taking hydrocortisone for my adrenal fatigue. I had also recently figured out that a few of my supplements were making me sick from corn derivatives in their ingredients. Fixing these things, combined with my new sleep routine, felt nothing short of miraculous. For the first time in my life, I was sleeping! I went to sleep at a decent hour, slept with my ASV (a form of CPAP machine) and woke up feeling rested. It was a miracle! Yes, I still had chronic fatigue, yes, I still had pain and all sorts of other symptoms, but at least I didn’t wake up feeling more tired than when I went to bed. And in general, my health was much better. It was amazing!

Sadly, that only lasted a few months. I noticed I was running low on my melatonin so I went online to reorder it, and found that the company had gone out of business! I was so disappointed. This had been working so well! My doctor didn’t have any suggestions, so I went online. Finally, I found a liquid melatonin that was gluten-free and corn-free. The dose was too high, but I hoped that a single drop, instead of a dropper-full, would be ok.

I took one drop and it was too much. I diluted it with water, making a 1:1 ratio. Nope, still a hangover in the morning. So I did a 2:1. I felt better in the morning, but still hungover. Meanwhile, it wasn’t doing such a great job of making me sleepy at night. Huh. That wasn’t right.

I struggled for 7 loooooong months. I tried different amounts. I tried different times. I thought maybe something about my body had changed. Or maybe it was the stress of the pandemic (even though I started it before the pandemic and had troubles even then.) I still had a few of the old pills. I had saved them, thinking it would be easier to take them with me on trips instead of the liquid (this was just before the pandemic, when still I expected to do some travel.) I took those 1/4 tablets for a few days and felt so much better. I went to sleep earlier, woke up feeling alert, and had more energy all day long. I took the liquid again and stayed up too late, woke up sleepy, and had less energy all day. What the…..?

This should be labeled as slow-release! This hurt me so much and I didn’t know why until yesterday.

It made no sense. They’re both melatonin, right? Finally, last week, I had an epiphany: what if this is a slow-release? The assumption for all medications (or so I thought) is that they are immediate-release unless they say otherwise. In fact, many melatonin products are specifically labeled as being slow release. I looked up the old melatonin and yes, it was immediate-release. I checked the new one and it didn’t say anything on the label. Yesterday I called the company and got my answer: it is slow-release. Holy crap!

This means that for 7 months, I have been struggling, feeling worse, because my supposed medication is slow-release and wasn’t labeled as such. I was pissed! I still am, but I’ve calmed down a bit. Sort of. Ok, not really. This is inexcusable!

Now the search begins again. Yesterday I started a spreadsheet. I am scouring the web, checking all forms of melatonin. No one else makes anything less than 1mg, so I need to get a liquid form that I can dilute. It has to be gluten-free and corn-free. It has to be immediate release. I will pay anything, but I must find this unicorn of melatonin products. Because damn it, I want my sleep, my alertness, my energy back!

If you happen to know of a gluten-free, corn-free, low dose, immediate release version of melatonin, please let me know and I will be forever grateful.

Meanwhile, if anyone needs me, I’ll be at my computer, spending hours researching a product that I should have had last winter, if only the one I bought had been properly labeled.


The rules are always changing

July 20, 2020

I remember when I first made the connection between the weather and my gastrointestinal symptoms and fatigue. I was lying on my dorm room bed, nauseated and exhausted, and it suddenly hit me: this wasn’t the first time I had felt this way on a hot day. I paid attention and sure enough, a pattern formed.

Of course, the weather wasn’t my only trigger and it would more than a dozen years before I finally put together some of the pieces of my health mystery. Still, this was an excellent start.

Screenshot_20200720-121807

Over the years, as my overall health worsened, my reactions to hot and humid weather got worse, too. I began to avoid spending any more time outside in the summer than absolutely necessary. I love being outside in the cold air of the fall and winter, but sadly, most folks do not unless they are doing winter sports, which I can not do. When my friends hang out outside in the summer, I can not join them. This has been incredibly hard.

Last year I noticed some improvement. My overall health has improved a lot, and my new medication last summer probably had a bigger impact than I had realized. I didn’t think too much of it until this summer. Somehow, I could be outside without immediately feeling terrible. Fantastic! Or so I thought.

One hot day, I waited until the evening to take a walk. It was still warm and humid, but not as much, and I was feeling ok. I walked farther than I had planned. It was wonderful! Then, almost halfway through my walk, that particular feeling that I know so well hit me and I knew I would need a bathroom, and fast. I turned around and headed home as fast as I could. Thankfully the symptoms weren’t too bad (on my admittedly skewed scale.) Still, that wasn’t fun.

Another day I was sitting outside, enjoying the fact that I could simply be outside. It was around 82F and the dew point was around 60. Normally I couldn’t have been out in that weather, so this was a real treat! Until it wasn’t. Until that feeling hit me again. I got to my bathroom as fast as I could and felt horrible the rest of the day.

I knew the old rules. I knew that within moments of being in the heat and humidity I would feel bad, but if I got into air conditioning quickly enough, I could avoid feeling horrible for the rest of the day. But these new rules are confusing. My body seems fine… until it suddenly isn’t, and by then it’s too late to avoid the symptoms. How long can I be outside now? 1 minute? 5 minutes? 10 minutes? And what are the new temperature and dew point cutoffs? What does my body now deem acceptable? I still check my weather app carefully, but I no longer know what will trigger my symptoms and what won’t.

The changing rules are one of the trickier challenges of living with chronic illness. This is nothing new. The rules have changed many times over the years, and every time it’s a pain in the ass to figure out the new rules. There’s no guidebook – it’s all trial and error. I don’t like it, but I have no choice.

Going outside is more important than usual this year. Typically when I get tired of my apartment, I go to the library or I walk around a store. I find visit friends. None of that is possible this year. On the other hand, at least when I feel sick, I don’t have to worry about missing out on plans outside of the house, because there aren’t any.

I am counting down to autumn, when I won’t have to worry about the temperature any more. Until then, I will be sitting at home, trying to figure out which days I can go outside without paying for it later. And feeling very grateful for my apartment’s air conditioning.


What even is acceptable risk anymore?

June 24, 2020

This will probably make no sense to those in other countries, where folks are taking coronavirus seriously and are staying isolated in order to reduce cases. Here, many people are trying to resume their “normal” lives as much as possible even though we never go through the first wave, and now we’re seeing cases rising again.

So now as one meme put it, I feel like I’m being gaslit all the time. On the one hand, I see people going to the grocery store, going to the beach, and doing all kinds of things, and it makes me feel like I should be able to take on a little more risk. But then I remember just how nasty COVID-19 is. Even if the risk is small, getting this thing could be disastrous, and it’s just not worth taking a chance.

Prime example: dogs. Recently I pet a couple of neighbors’ dogs and it made me super happy. Each time I was near my apartment, the owner stayed at least 6′ away, and I washed my hands carefully immediately afterwards. I think that was ok. I feel pretty sure, anyway. But now someone wants me to watch their dog for a few days and I’m so torn. My friends mostly say it’s fine. My doctor says it’s fine. But I’m worried. Because even if the odds of me getting sick are slim, is it worth taking that tiny chance? I just don’t know!

And that last sentence is the key: I don’t know. Because no one knows. We don’t know how risky anything really is. There’s so much unknown about this virus. While it has turned our lives upside down, it’s still new, and we know very little about it.

I hate playing these guessing games. The safe thing is to say no, and I could do that easily. The problem is, I haven’t gotten within 6′ (or really, 10′) of anyone in more than 3 months. I haven’t hugged my parents. I haven’t gone on a date. I haven’t seen friends. Nothing. Having a dog visit would be wonderful company. It would be good for my mental health, but only if I can relax. If having that little cutie here would stress me out, then it’s not worth it.

So while I continue to debate, I would love to hear your thoughts. What do you all think I should do? Watch the dog? Turn them down? Take the dog but provide my own dog toys? (I would still have to touch the food and treat containers, the leash, etc. And I can’t wash the dog – he’s too big for me to bathe him.) What would you do?


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