The past 18 days….

February 8, 2025

It’s been a time, hasn’t it? Even my friends in other countries are starting every conversation by talking about the current political situation in the U.S. I’ll warn you now, if you’re here for some magic solution to what’s happening, I don’t have it. I wish I did.

I’m watching my trans and nonbinary friends suffering. My fellow Jews are thinking about how they’ll leave the country if it comes to that. And I feel trapped.

If I need to leave the country, I have few options. Some countries might take me as an asylum-seeker if it comes to that. Since I can’t work full time, few countries would accept me under other circumstances. I could go to Israel, but the politics isn’t so great there and it’s a very country to live in. And I need to consider that I live alone. While friends talk about leaving with spouses and kids, I’d be alone. I need help to deal with my health issues. And what about access doctors and medicine?

Then I think about those same issues here at home. The Republican administration is making very clear threats against Social Security, Medicare, and Medicaid. If you’re not in the U.S., then simply put, Social Security provides payments to the elderly and disabled. Medicare is federal health insurance for the elderly and disabled while Medicaid is state health insurance for the poor. (It’s more complicated that this, but you get the idea.) I’m very fortunate. I could manage for a while without Social Security payments. But without Medicare and Medicaid, I’m screwed.

There are ripple effects, too. My physical therapist does something that no one else in the area does anymore. I’m already wondering what I’ll do when she retires, since she’s nearing that age. If Medicare disappears, most of her patients won’t be able to pay her, and she’ll need to close down her practice. How many other medical practices will be decimated?

Then I think about my many medications. Some help me function better. Some keep me alive. What happens if there are supply chain issues? Even if different versions are available, I may not be able to take them. Right now I have to compound all of my medications because they either aren’t available in a non-compounded form, or because the “regular” versions contain gluten and/or corn, both of which I must avoid completely. I already pay out of pocket for all of my medications. I guess if you want to find a silver lining, then losing Medicare and Medicaid wouldn’t change that, and I’ve already budgeted for it…. but that’s really grasping for a bright side. And of course, again, that’s only if the medications I need are still available.

Every time I make a medical appointment now, I wonder if I’ll be able to keep it, or if my insurance coverage will be gone by then. I can’t stockpile medications, but I would if I could. I can’t front load medical appointments. Insurance only covers them every so often (for example, I can’t see the eye doctor before August if I want it to be covered) and of course, I can’t predict when new issues will arise. Maybe later this year I’ll have an accident, develop a new symptom, or need to change a medication’s dosage. Who knows?

So, like every one, the best I can do right now is make sure my passport is up-to-date (thankfully it is!) and take it day by day. I’ll prepare where I can, while knowing it won’t make much difference in the long run.

But I’ll do one more thing: protect my mental health the best that I can. I talk to friends and family about all of this when they bring it up, but I don’t bring it up. And I try to keep those conversations short. I already had a timer on my phone’s news app. I used to have that because I spent too much time on it and it was a distraction. The other day I reduced the time limit even more because I realized that even 25 minutes was too much news. It was all repeating, and nothing about it was good. I needed a break. (If you want to do the same for your news aggregator or any other app, you can do it on Android and iPhone. There are also various browser extensions to limit your time on various websites, but you’ll have to look those up yourself.) I’m playing with my pup, enjoying hobbies, and trying to spend non-political time with friends. Distraction and compartmentalization are so key.

I think it’s important to stay informed. I’m actually a bit wary of anyone who isn’t paying any attention to what’s happening. But living in the thick of it all the time isn’t healthy either, especially for someone who deals with anxiety. I’d like to volunteer with a group that’s doing something about this, but I don’t feel up to it right now, and I need to prioritize my own well-being at the moment. Have a year and a half of extra-bad fatigue, I’m slowly starting to feel better. I’ve joined a monthly book group and a weekly knitting & crochet group. But I still don’t feel that I have the energy to date, and while I have a goal of walking every day without the dog (because he’s very slow and sometimes refuses to leave the area around our building), I’ve only managed to do that a couple of times so far this year. I’m improving, but I still have a long way to go. Volunteering would be great – I’d feel like I was actually doing something useful – but it’s beyond me right now, and I’m trying to be ok with that.

Obviously this is all just the tip of the iceberg. I’m not writing today about the inevitable rise in grocery prices, what happens when nonprofits serving disabled folks are shut down, or the myriad other issues we’re facing. After all, there’s only so much any of us can think about in a given day.

What about you? Are you feeling affected already? Are you worried about how you’ll be affected in the future? How are you handling it all? I wish you all the best, and hope you’re managing as well as possible!

Leave a Comment » | Expectations, Frustration, Healthcare, Medication, Politics, Rants | Permalink
Posted by chronicrants

How screwed will I be?

November 23, 2024

It’s practically impossible to be unaware of the recent election here in the U.S. While technically I knew it could go this way, I still wasn’t prepared. I woke up to find messages of fear and condolence from friends in later time zones. And then I read the news.

This will have an impact on everyone, though obviously some more than others. Folks in other countries will likely be impacted. Non-citizens in the U.S. will be impacted. People of color will be impacted. And then there are people like me.

I look like your average white, middle-aged woman living in a suburb. Sure, this will impact everyone, but you’d think I’d be impacted less than most if you just glanced at me. But the thing is, while I’m a middle-aged woman, I’m also disabled, relying on social security, Medicare, and section 8 housing. I’m Jewish. I’m queer. Am I screwed?

This is such a strange situation. I can see myriad ways my life could change in the coming year (or two or three or more) but I can’t see a way to prepare or prevent the fallout. There are no alternatives for the benefits that might be taken away. It’s too late for political organizing. I live in one of the better states to be in right now, and I’m grateful for that, but it will only take me so far.

In theory I should schedule my medical appointments asap while I have insurance coverage, but that’s not realistic. Some are checkups and can’t happen sooner. Many are scheduled as-needed, when something goes wrong. My medications aren’t covered by insurance anyway, so stockpiling won’t help. All I can do is wait and see… and hope.

I’m scared for myself. I’m scared for my friends. I’m scared for acquaintances. Who will survive this, and how? Will my friends lose their marriage rights? Will immigrant citizen friends lose their citizenship and be deported? Will friends because sicker or even die if they lose access to necessary healthcare? Will friends become homeless if they lose their section 8 benefits?

I hope everyone makes it through this ok. Mostly, I have been compartmentalizing. I distract myself whenever I begin to worry about this because, like I said, there’s nothing I can do to prepare for it. I want to believe we’ll all make it through ok, but I don’t know. The one thing I know is that I can only take it one day at a time. So that’s my plan. One day at a time.

I wish all of you the best of luck. Whatever your situation, I hope you’re able to manage through the upcoming changes. Hugs to you all!

2 Comments | Frustration, Politics, Rants | Permalink
Posted by chronicrants

Discovering Section 8 changes by word of mouth

March 27, 2024

It started with a message from a friend, asking what I knew about the situation. This was the first I’d heard of it. My friend heard about it from a friend. That friend of my friend heard about it from a friend of hers. The news spread, and we scrambled to learn the details, and how it would affect us. The news? The federal government is changing Section 8 housing voucher requirements this year. Today, two months later, I have more information, but none of the housing authorities in my area that I’ve checked have notified their tenants. Word is still spreading by word of mouth. And it’s spreading slowly.

I don’t want anyone to panic, but I also don’t want folks left in the dark. So I’m going to share what I know so far.

First, let’s take a moment to consider just how shitty this is. The federal Department of Housing and Urban Development (HUD) apparently changed the rules back in 2016, and the change was to take effect in 2024. That gave everyone 8 years to get their shit together. But they didn’t. The director of my housing authority told me that she only recently received information about this, and is still waiting for even more details. WTF? There are millions of people on Section 8. You’d think HUD would have a plan for this, but apparently, they don’t. Or they do, but it’s not a great one. Because every housing authority should really have gotten this information in enough time to formulate plans.

Section 8 is a federal program in the U.S. to help low income folks with housing. It’s a federal program, but it is administered by local housing authorities, and each can have slightly different rules. For example, one town might require housing inspections yearly while another could require them twice a year. I liked living in my former city, but the rental limits allowed on those Section 8 vouchers were unrealistically low. A big reason I moved to my current town was because they had much more realistic voucher limits – with effort, I could actually find a 1-bedroom apartment that met their requirements. No amount of effort would have made it work in my former city. These kinds of allowed differences are going to be very important for the current situation.

So far, I have learned about 3 changes, but my impression is that there could be more coming. Of course, it’s hard to tell, given the lack of transparency or notifications. I have spoken with my state and U.S. rep’s offices (and I spoke to my state rep directly), my town’s social worker, and the executive director of my housing authority. The representative’s offices didn’t even know about this until I informed them! One even told me that there is no asset limit, and sent me a pdf with that statement. I had to remind him that this is something new in 2024, and point out that the pdf he sent me was dated 2020. That’s how horrible the communication is.

The first change is an asset limit. Until now, there hasn’t been any asset limit. The new asset limit is $100,000. As the head of my housing authority said, to some people this is a huge amount of money and to others it’s very little. My understanding is that folks with more than $100,000 in assets will not be eligible for a first-time voucher. For folks who already have a voucher, it is up to their individual housing authority! Yes, that’s right, one town might enforce this new rule and the neighboring town might not. And it’s just down to luck whether your city/town enforces it or not. Just like whether your city/town requires one or two housing inspections per year. And while some housing authorities have already made decisions about this, others have not. Either way, there’s still a chance to say something. I’ll get to that in a moment.

The second change has to do with medical deductions. I spend a fair amount on medical practitioners, equipment, tests, and treatments that aren’t covered by insurance. This reduces my reported income, which in turn reduces my rent. Apparently, this is going to be changing. Unfortunately, I learned about this on the phone, like with all of the other information, because nothing is in writing yet. And I’m not sure I understood. It sounded like the minimum amount of medical expenses that would count is currently $4000, and that would be going up to $8000. That would be a huge problem for a lot of people! But again, I’m not 100% sure about this, so please check for yourself (once they actually know what they’re doing, that is.)

The third change seems like a good, but strange, one. Current voucher holders will be asked if their income is under a certain amount. On the phone, I couldn’t tell if she said $15,000 or $50,000. I’m guessing the former, but I’m not certain. If they say yes, then they won’t need to send in proof.

Apparently, these changes are meant to decrease the paperwork that housing authorities are dealing with. I can see how this would be the case. If someone says they earn under, say, $15,000, and based on their initial paperwork this seems likely, then the housing authority won’t need to go to so much trouble. If the minimum amount of medical expenses to count is doubled then fewer people with bother to submit receipts. If assets of over $100,000 knock people out of the program, then a quick asset check will take care of things and there will be no need for income verification. Yup, that part makes sense.

The problem is the human toll. HUD says they want to reduce homelessness. That’s a good goal. But these measures won’t do that! Let’s say I had $150,000 in assets. That would kick me off my voucher in some towns. In my case, without the voucher, my rent would go up $2000 in my current “affordable housing” apartment. Maybe I could find someplace cheaper to live, but the options are very limited, especially because I need a home without stairs. I would need to get a roommate, but then the chances are that they would eat gluten and I would get a lot sicker. A friend is currently looking for an apartment with a roommate and even then, her budget (which is $1100 more than I currently pay) is making that very difficult. Still, let’s say I get a roommate (a bad idea!) and only pay another $1100 per month. In three years and two months, I’ll be under the asset limit. If I pay the extra $2000 to stay in my current apartment, I’ll be under the limit in under two years. The problem is that I’ll need to reapply for Section 8. In my area, the wait lists are 10 years long. In other areas, the waitlists are closed altogether. In my current home, that $150,000 in assets would be gone in under 6 years, long before I’d be likely to get another voucher. Then what?!?

Now, I want to state here that I am very privileged, and I am grateful for it, while also feeling horrible that so many others are not. First, my housing authority is not implementing the asset limit which, yes, would cause me to lose my voucher. At least, this is what they say. I’ll feel better when I see it in writing. And second, my parents are able to help me financially. While they can’t cover all of my bills, they can give me enough to make things work. And as a last result, I could move in with them. This isn’t a great option, though, because (1) none of us would like it (2) their home has stairs to get in and the guest room is on the second floor (3) they eat a lot of gluten foods and wouldn’t stop if I moved in. Still, at least I wouldn’t be homeless, like so many others will be.

Now, if HUD really wants to reduce homelessness, you know what they could do? They could offer more vouchers! There’s obviously a need for more vouchers when wait lists are so long. What they should not do is kick people out of the program. These are folks who are saving up for a house, using their funds to cover medical expenses, paying off debts, and more. Taking away their housing vouchers doesn’t mean they’ll land on their feet. It will only perpetuate the cycle.

If you have a Section 8 voucher, there is one thing you can do: speak up! It seems that housing authorities are required to have a 90-day public comment period before instituting major changes like these. Few people go to these meetings or send in comments, so the ones that do speak up are heard even louder. Speaking up doesn’t mean the housing boards will listen, but it’s worth a try! Call your local housing authority and ask then their public comment period will start and how you can best comment. Attend their meetings. Make your voice heard!

Of course, the other thing we need to do is to elect more politicians at all levels who work to help low-income and disabled folks – I mean politicians who actually help us, and don’t just implement these kinds of policies (or appoint people who implement these kinds of policies) that might look nice on paper but which actually harm a lot of people. Low-income and disabled people are blamed for so many of society’s ills. We’re convenient scape-goats. But those problems aren’t our fault, and taking away our lifelines won’t improve anyone else’s lives. We need people who will fight for us, not against us.

Before I leave, one last thought: please share this. It is disgraceful that this isn’t being talked about. The only article I have seen came the National Low Income Housing Coalition. No major news outlets are discussing it, housing authorities (at least in my area) aren’t putting out statements, and even our politicians don’t know about it. I don’t want someone to get a letter in the mail letting them know they’ll be losing their voucher in just a few months. Or that their medical expenses will no longer count as deductions. That won’t be enough time for people to make arrangements, and the emotion turmoil will be so much worse. People have a right to know that they might be facing these changes. I rarely ask you to post my blog posts to social media or to share them with friends, but I think this is one case where it’s worth asking. We need to let people know what’s coming so they can prepare.

If you have more details about this situation, please comment below or email me! I want to have as much information as possible. I’ll update this post with anything I learn.

2 Comments | Educating, Frustration, Politics, Rants | Permalink
Posted by chronicrants

Vaccine ableism

March 19, 2021

For weeks, whenever someone asked me when I would be eligible for the Covid-19 vaccine, I told them I would be eligible at the start of Phase 2. They nodded. It made sense. It made sense to me, too. After all, I have a bunch of risk factors. Phase 1 was for medical personnel, and Phase 2 would be for folks with risk factors due to age and/or health conditions, as well as essential workers who weren’t covered in Phase 1 (grocery store worker, utility workers, delivery workers, etc.). Phase 3 was for everyone else. The first part of Phase 2 was for folks who were 65+ or had 2 or more co-morbidities, which I knew I had. But somehow, oddly, I was wrong.

I started to suspect something when I saw the list of conditions that Massachusetts was counting as co-morbidities. At the time, the state’s website simply offered a link to the CDC’s website. The CDC (the Centers for Disease Control and Prevention) offered two lists. The first list was for more serious conditions. I didn’t have anything on that list. The second list was where I fell. I have 5 different conditions/medications that fit into that list. But for some reason, Massachusetts wasn’t using the second list, only the first one.

Then Massachusetts did something mysterious: they added smoking and obesity to the list of eligible conditions. So now people I knew were qualifying because they smoked and were obese but were otherwise totally health. Meanwhile, I wasn’t eligible yet despite having multiple autoimmune conditions and taking an immunosuppressant medication, in addition to other things that were also suspected to be co-morbidities, like central complex sleep apnea. In fact, I wasn’t going to be eligible early at all. Nope, I was getting lumped in with the general population in Phase 3. WTF???

Over and over friends would ask, when are you eligible? Over and over I responded, “I’m not eligible until the general population.” I lost track of the number of times someone said, “I can’t believe I’m eligible before you!” or asked “Why the hell aren’t you eligible before me?” (Spoiler alert: the answer is ableism.) I watched friends with similar health conditions getting vaccinated in other states. I watched friends get vaccinated because they were technically eligible, even though it wasn’t intended for them. For example, one was eligible because she works for a hospital, even though she works in administration, having no contact with patients, and has been working at home all year.

Meanwhile, at my last medical appointment my doctor said, “You need to get the vaccine as soon as possible.” That was immediately followed with, “You aren’t eligible until Phase 3.” I tried to convince myself that waiting wouldn’t matter. After all, I’m staying at home, right? But what happens when I can’t stay home? What really changed my mind was the breast cancer scare I had several weeks ago. I absolutely had to be seen in person. What happens the next time I have to see a doctor in person? Because sooner or later, it will happen again. The vaccine won’t protect me 100%, but it’s a good start.

And to me, that’s the point. Yes, everyone wants the vaccine. But while some folks want to get it so they can eat at a restaurant or hang out with friends (both very important, and I’m definitely not negating the importance of either one), those are optional. There are ways to see people outdoors and at a distance with masks on. Meanwhile, some folks must get medical care, in person, up close, and indoors. Yes, medical offices take precautions. Still, these are not optional visits, and we should be as protected as possible.

Are there folks who need a lot more medical care than me? Yes. Are there folks who are at much higher risk of Covid complications? You bet. I’m not suggesting that people like me should have been first in line. Not for a second. I am saying unequivocally, without the slightest hesitation, that we should not be last in line. It is inexcusable.

This is nothing short of ableism. I have had many doctors tell me that I am at higher risk. My rheumatologist keeps reminding me to stay isolated. I have been following the science. I see folks who have higher risk factors than me who are likewise not eligible until the general population. And yet, Massachusetts did not take us into account. Who determined the order of the vaccine eligibility? Were there doctors and scientists involved? How on Earth did this happen? Why allow folks on that first CDC list but not the second? Why allow people who are obese and have type 2 diabetes to get vaccinated at the start of Phase 2 but not allow someone with type 1 diabetes and severe asthma until the end of Phase 2, and not allow someone who is 54 years old with type 1 diabetes and liver disease until the general population? This makes no sense.

This reminds me of one year ago, in the spring of 2020, when we were first learning about the risk factors of having severe complications from this horrible virus. Over and over people said that most folks shouldn’t worry too much because it mostly just effected the sick and elderly. They were saying, “I’m not worried because I’ll probably be fine, it’ll just kill others.” They were saying that they didn’t care about our lives. That our lives didn’t matter as much. That our lives had less value. Well, fuck that. Our lives have plenty of value and suggesting that it’s okay for those who are sick and/or elderly to become incredibly ill and possibly die is horrifying and inexcusable.

And now, one year later, so many who are sick and older are told to wait because their/our co-morbidities don’t count. What bullshit!

This week, Massachusetts announced that in one month everyone will be eligible for the vaccine. So many disabled people, already at a disadvantage because of difficulty accessing the system, will be forced to compete with healthy, less-at-risk folks for those coveted timeslots. If the past is any indication of the future, a lot of disabled folks will end up at the end of the line, behind healthy folks. This is not ok.

There is nothing I can do about this. I called the governor’s office and reached out on social media. I have spoken up about it in the few ways that I could. I know that this post won’t change anything. But hey, this site is called Chronic Rants, after all, so I am ranting. I am ranting because once again, the government is being ableist and getting away with it and it makes me want to scream.

Maybe we shouldn’t be first, but we absolutely should not be last.

2 Comments | Frustration, Healthcare, Politics, Rants | Permalink
Posted by chronicrants

« Previous Entries