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.


Staying busy while stuck in isolation

September 14, 2020

One thing about life with disabling chronic illnesses is that I was better prepared than most for life at home. After all, so often I am stuck at home due to my health, or I need to do stay home in order to rest up so that I can go out later on. A lot of my hobbies and interests are sedentary ones, thanks to my health, so the transition was easy in that regard. The social part is difficult, of course, but staying busy is easy. In fact, I don’t even have time to get everything done!

Meanwhile, most people I know who weren’t working full time from home and didn’t have young children at home were at a loss as to how to stay busy. As things opened up, many of them found adventures outdoors. I am still staying home, though. I would not go anyplace indoors or around other people. I do not feel that is safe in my area. As for outdoor adventures, I have no one to go on an adventure with. I live alone, and there is no one I am comfortable being in contact with right now, unfortunately. A picnic alone might be safe, but it’s lonely. A walk in the woods where people are around isn’t safe, and walking with no one around at all doesn’t feel smart. I would love to see the ocean, but I can’t drive that far right now, and I can not get into a car with someone else. So I am spending a lot of time at home.

People keep asking me how I am managing to stay busy. Here are a few of the things I have been doing. Please share yours in the comments, to help anyone who’s bored to get some new ideas.

  • House stuff. Cooking, cleaning, laundry, and all of that less-than-exciting stuff still has to be done, even during a pandemic.
  • Physical therapy. I am doing more than ever because my body is not doing well with all of this sitting in my apartment. It’s not like I was super active before, but even walking around a grocery store is exercise that I’m no longer getting.
  • Medical appointments. My body doesn’t stop having problems just because there’s a virus ravaging the world. I am having almost all of my appointments virtually, which has saved me a lot of energy and time, but I am still having them.
  • New hobbies. At the start of the pandemic, I figured I better start something new to make up a bit for all I was losing. I had wanted to try the ukelele for years, so I bought one. I have already learned a bunch of songs through free YouTube tutorials. I practice most days and it’s a lot of fun.
  • Old hobbies. For many years I have loved to read, crochet, and knit. Those are perfect pandemic hobbies. I did them daily before, and I continue to do them daily. I watch tv in the evenings, too. Before I watched tv any evening that I didn’t go out. Now, I watch tv every evening that I don’t have a Zoom call. *sigh* Oh, and this blog counts, too. Hobbies aren’t only things that are done daily, and writing here every few weeks is a great activity.
  • Volunteering. I did some volunteering before and I still do it. Because of my disabilities, I only volunteered for work that could be done primarily from home. That made the transition easy. I have taken on extra tasks, too.
  • Errands. Yup, those things still need to happen. I find shopping for groceries online to take a lot longer than going in person used to take. Dropping off paperwork at an office can still be done, even if I don’t go inside. Shopping for things online that I would typically get in person is a chore that takes ages, but it still needs to happen.
  • Social media. Some days social media is a drain that wastes my time, but many days it adds value to my life. I manage several Facebook groups and pages in addition to having my own personal feed. It’s a great way to keep up with family and friends.
  • Email, texts, and video chats. I often joke that I have a better social life now than I did before, but it’s sort of true. Meeting online isn’t the same as meeting in person, but it’s a hell of a lot easier. Since it takes so much less energy, and I don’t have the physical pain that comes with driving, I am able to have multiple social video chats in one day! I certainly couldn’t meet up with that many people in person in a single day. Plus, many people I am talking to aren’t local, and we are now realizing that we should have been doing these video chats for years. Hopefully we’ll keep them up. Email and texts take ages to answer. I’m glad for the opportunity to keep up with folks, but I do miss the ease and speed of phone calls.
  • Cleaning out…. things. Between cleaning out all of my way-too-many-what-was-I-thinking? email accounts and cleaning out physical stuff, there’s plenty to do. I’m enjoying the rewards of empty inboxes (yay for inbox zero! Even if it only lasts an hour….) and more space in my apartment.
  • YouTube videos. I have been watching lots of YouTube videos. There are opportunities to see things that wouldn’t typically be available, in addition to all of the previous kinds of content. I have been enjoying interviews with Broadway actors who were/are in isolation, cute dog videos (oh, how I miss dogs!), crochet tutorials, and so much more. I particularly like this channel for things that are disability-related.

All of that, plus random other things that I’m sure I’ve forgotten, are keeping me plenty busy. A few other things you could try would be taking online courses at a local college or through sites like Udemy.com or Lynda.com (hint: many libraries offer free memberships). You could also learn crafts online with YouTube videos or by taking classes, which are offered in many places. Try reading new books, listening to audiobooks, or trying new podcasts. Watch movies you’d always wanted to watch. Learn a language. Research your family genealogy. Redecorate your home in small, manageable ways.

I have noticed that many people are worried about taking up a new hobby or project, thinking they won’t have time to keep it up when things return to “normal.” Why start something that they will just have to give up later? But I don’t think that’s the right attitude. Instead, why not start something you can enjoy while you’re in this difficult state? Then later one, when life returns to “normal” or some other state, you can decide what to keep. You may just find that you enjoy your new hobby more than something you did before, and you will let go of the former. Or you might rotate them. There are no set rules here; you get to make it up as you go along!

So that’s what’s been keeping me busy, along with a few extra ideas for you. Please share your ideas in the comment! After all, these ideas will be useful for anyone who is in isolation during the pandemic, as well as anyone who is stuck at home due to disability and/or illness in the future.


What isolation is teaching me about my health

August 20, 2020

While a lot of folks are venturing out into the world again, I am mostly staying in my apartment. During the hot days of summer I generally stay indoors anyway, since the humidity and heat trigger my symptoms. This year, with no other indoor places as an alternative, I am at home. And I am surprised at the impact it is having (and not having) on my health.

It became clear over the years that too much activity would lead to more fatigue, more pain, more gastrointestinal symptoms, and more random symptoms, but I could never be sure what constituted “too much” activity. I knew that resting helped, but how much rest was needed? More than that, I never knew if an increase in symptoms was from “too much” activity or from something else.

Then there was the food angle. If I had diarrhea, for example, was it from something I ate, “too much” activity, the weather, or something else? Even if I ate my own food, when I was out of the house I would wonder if I could have gotten gluten cross-contamination somehow. What if I ate food made by someone else? Would that be safe?

With so many variables eliminated, it is fascinating to see what remains. Aside from a couple of carefully chosen convenience foods (mmm, gluten-free frozen pizza!) I have eaten an item made by someone else only once in the past 5+ months: a birthday cake. My mother made it, and I trust her to make sure it is gluten-free, corn-free, and free of any cross-contamination. I have not eaten at a restaurant or even gotten takeout. My avoidance of takeout is partly from Covid concerns, partly from convenience (there aren’t many places near me with food I can eat anyway), and largely because I am enjoying the safety of eating my own food. Yes, I’m tired of constantly cooking and constantly washing dishes, but I love the confidence that my food is safe.

Of course, it’s not all easy peasy. Twice I was about to eat frozen vegetables when I realized they weren’t my usual brand (the downside of having someone else do my grocery shopping.) I checked the bag and each time, there was a risk of cross-contamination. Yikes! I am so thankful that I caught them both in time.

For the most part I have felt pretty good. That tells me a lot about the impact of activity level on my health. I was especially aware of this through mid-June. I had almost no pain aside from the predictable pain that came from not attending physical therapy. Then the weather shifted. I am so incredibly thankful to live in an apartment with central air conditioning. None of my previous apartments had it, and when I moved several years ago, I made it a priority. I am especially grateful for that now that I am in isolation. In previous summers, when my window units weren’t sufficient, I would sit at the library, exercise by walking around a craft store, or spend several days at my parents’ house, enjoying their company and their air conditioning. With none of those as acceptable options now, I am stuck at home. Still, even with the door closed and the air conditioning on, the weather seems to be impacting me. And when I do venture out to check the mail or take a short walk, I feel it even more.

I am glad that, as I wrote last month, I am less heat intolerant now than I used to be. Still, “less than before” still doesn’t mean I can handle it well. For two weeks I barely left my apartment. It wasn’t good for me physically or emotionally, but the alternative seemed worse. Even while staying indoors I had increased fatigue (perhaps from the lack of outdoor movement? but probably not), increased joint pain (ditto? but probably not), increased inflammation, and increased gastrointestinal symptoms. The inflammation is bad. My knees are so swollen that my knee braces barely fit. My physical therapist (the one person I get within 10 feet of) put her hands on my neck and shoulders and instantly said that she felt the inflammation. This is not good.

Two weeks ago I received test results: I am hypothyroid. Again. I have had to adjust my medication many times over the years, sometimes in the summer and sometimes in the winter. However, this time I can rule out a lot of factors that could be impacting my thyroid. After all, not a lot else is going on!

Yesterday I felt lousy. I had diarrhea followed by fatigue. It was easy to cancel my “plans” for the rest of the day, which consisted of writing a blog post here, taking a walk, doing my physical therapy, and doing some organizing around the apartment. Instead, I watched tv and crocheted. It was relaxing and it helped. Normally I might have thought I had done “too much” that day, or wondered about something that I ate outside of my home. Instead, I could narrow the culprit down to two things: the weather and what I ate. I had eaten ice cream after lunch, which is usually fine, but I’ve had a lot of dairy lately and maybe it was just too much. And right before lunch I had felt hot on my way home from my walk. The humidity was bothering me, which is never a good sign. And then I ate immediately after I got home because I had a therapy appointment online that I needed to be ready for. Oops. I’m pretty sure those two things combined were the problem. It was good to at least have a reasonable guess as to the cause of the problem, and then to be able to easily rest afterwards.

The other day I met up with a friend. We took a walk, sat and chatted, walked some more, and went home. We kept our distance and wore masks. We were safe. But part way through the visit I felt ill, and I know 100% it was from the heat. On a cooler day I had met up with my parents. We didn’t walk as much and just sat. I felt fine afterwards, just tired. I’m not used to even small amounts of socializing any more. The difference was definitely the weather.

So what’s my point? My point is that I am getting a better understanding of how the many different variables of a “typical” day impact my life. I can figure out what makes me feel ill, and what doesn’t have an impact or even makes me feel better. The goal for me will be to use this information when, one day, I am able to go out and do things again. I will need to find a balance. Avoiding symptoms 100% is obviously not possible; if I can’t do it now, then I’ll probably never be able to do it. I also don’t want to cut off the rest of my life in order to sit at home and hide from my symptoms. Still, my hope is that I will get a better sense of where the balance lays, so that I will be able to focus more on the things that are worth the increased pain and other symptoms, and avoid the ones that aren’t.

I have also learned how big of a difference telehealth makes for me, and will advocate for its continuation. Several of my doctors have already said that they plan to continue with it, so I will need my insurance to cover it. Not having to drive for an hour to sit in a waiting room before finally seeing my doctor for a 15 minute conversation that involves no physical examination is waste of everyone’s resources, and I will be glad to see that end. I want to reserve my appointment-related energy for the appointments where attending in person actually matters.

With isolation far from over, I know that I will learn many more lessons. These are an excellent start, though, and I am glad that there will be at least one positive thing to come out of all of this for me.

What about you? How has your health been during isolation? Are you learning anything new or clarifying previous assumptions? Please share!


%d bloggers like this: