The government is voting to kill us

March 15, 2017

On the one hand I don’t want this blog to get too political. On the other hand, how can I not discuss politics when the government is talking about taking healthcare away from millions of people!?

There is a lot I want to say, and I can’t say it all at this moment, but rest assured I will be back to discuss it another day!

For today I want to talk about this feeling that the government is trying to kill us, and how healthy, working people respond to that.

You see, I have said many times that the government is trying to kill us. If you don’t know what I’m talking about, look at that link above. Many healthy friends with jobs think it’s an exaggeration. Most of them will have health insurance through their employers. It might cost more, but they can make up the difference if they cut back in other areas. They hate it, but it won’t kill them.

And if they did lose their insurance, it would suck, but they could cough up the money for the occasional doctor visit or antibiotic. They would hate it, but it wouldn’t kill them.

Then there are people like me. I’m not nearly as well off as they are, but not as badly off as many of my other friends. Because most of my health conditions are pretty stable. If I miss a medication for a few months my health would decline, but I wouldn’t die immediately. I have savings and supportive parents who can afford to help me to a certain extent. We could find a way to cover my more basic health costs for many years. And maybe I would skip seeing the doctors who didn’t feel entirely necessary (though really, I try not to see doctors unless it’s necessary!) And hopefully, eventually, a new political party in office would fix things. We could cover the gap. Besides, I am likely to have some insurance coverage, even though it would be greatly reduced.

But then there are other friends of mine, not to mention the many strangers I have never met. These are people who do not have safety nets. They are more likely to lose their insurance altogether and they do not have the money to cover the costs. For these people, there will be no way to see a doctor or take a prescription. Even worse, many of them have illnesses that will quickly kill them.

These are limited examples, of course. I’m not getting into the many thousands who will become bankrupt and the many other thousands who will have to quit their jobs due to poor health.

These are horrible circumstances. Any reasonable person is upset by this. And then we remember…. our politicians are the ones who want to do this to us. A handful of people with high salaries and kick-ass health insurance (congresspeople have the best health insurance in the country) are deciding whether people like me will be able to see the doctors we need to see.

If you’ve been reading this blog from the beginning, then you know I was working when I started it. I hated to leave my job, but there was no way I could continue to work. I spent years fighting for the benefits I had paid for and deserved. It was a miserable road and I was horribly sick. Now, finally, my health is improving! It is not perfect by any means, but it’s so much better! I’m even looking for ways to start doing a little bit of paid work. This new health insurance situation could destroy that progress. It could stop me from earning any money at all. It could dash my dreams permanently, by making my health worse in a way I might not be able to recover from.

If that sounds dramatic, good! Because it IS dramatic! We are talking about taking away the ability for people to care for their health.

Healthcare should be a right, not a privilege reserved for the rich. But that is what the republicans in this country want. They want to give more money to the rich even if it means killing the poor.

They should be ashamed of themselves. They are voting to kill us.


When the government forces pain upon us

March 17, 2016

This week there was a difficult statement from the Centers for Disease Control. Well, difficult for people with chronic pain and their doctors.

There has been a lot of discussion around the use of opioids for treating chronic pain. It paints all users are addicts. It suggests that the deaths caused from addiction negate any benefit that might be gained from proper use of the meds. It suggests that there is no such thing as proper use. And so on.

For the record, I do not use opioids. I have tried them and have always found that they helped me very little and that their side effects were terrible. If they worked for me and didn’t have bad side effects then yes, I would use them every day if that meant living with less pain.

Also for the record, many close friends take opioids daily. They are not addicts. They take their medications responsibly. These medications allow them to do heroic tasks like shower, cook, and drive to medical appointments. Occasionally they can even do something fun, like have me over for a visit.

This week the CDC issued a guideline. This is non-binding, but it does usually have an effect on doctors’ practices. I won’t get into the details here, but they’re linked at the bottom of the article below. Suffice it to say, a bunch of people who don’t have chronic pain have decided that those with chronic pain don’t need opioids. Apparently Tylenol and Advil should be sufficient. In other words, they’re completely clueless.

I find this whole thing very upsetting. So on the one hand, I think it’s incredibly important to talk about it. On the other hand, I don’t feel qualified to properly and fully discuss it, and I find it upsetting to even try.

Here are just a few of my thoughts:

  • Lumping together all opioid deaths, including those from heroin use, is hurtful, hateful, and absurd.
  • How can they not be accounting for the increased suicide rate that will result from this? Do they not care, or do they not understand?
  • Do they really think people would take medications with terrible side effects if Tylenol and Advil (which aren’t harmless, by the way!) really worked?
  • Do they have any idea how many different things pain patients try? Do they know how many more things we would try if insurance covered them? I have such a list of things I would do if I only had the money and the energy!
  • Have they not considered that maybe, just maybe, limiting the use of legal drugs will lead to an increase in the use of illegal drugs?
  • If the concern is addition, why not work to prevent and treat addiction? Studies have made it clear that this won’t help.
  • Where is the compassion?

I want to say so much, but I don’t have the words. So here are some reactions I want to share. At the bottom of that article is a link to the CDC guidelines.

The chronic pain community put up a good fight and lost this round. But the fight isn’t over. I don’t know what will happen next, but I know that no one will be giving up!


How dare they!

March 8, 2016

Last year I got a surprising letter in the mail: I was coming up on the waiting list for Section 8! Section 8 is a housing program where the tenant pays up to 30% of their income in rent and the government pays the rest. This is huge!

Now, it’s not all great. Section 8 has strict rent limits that are very hard to meet. For example, in my town the rent would need to be no more than $1187 per month, including all utilities. I haven’t heard of a 1-bedroom apartment for so little in many years. Still, I figured it would be worth trying.

The waiting list for Section 8 can be 3-4 years. I’ve only been on the list for 2 years! Wow! So now it’s time to prepare, right? They need a lot of paperwork. Of course. I handed it all over.

Now, if you’ve ever applied for benefits in the U.S., you know how intrusive it can be. They want to know how much your income is. They want to know your spending on every little thing. They want your social security card, driver’s license, bank statements, copies of approval letters for all other benefits (because heaven forbid the agencies actually speak to each other!) and all sorts of other things. But I do it, because that’s how I’m sort of paying the bills right now.

I really hate handing over bank statements. There’s something about that which feels particularly intrusive and unnerving. But I did it. 12 months of bank statements. It took ages to print out all of the statements and white out the account numbers. Still, they showed which bank was mine, how much money I had, what I deposited, what I paid out, my name and address, etc.

And they lost them.

Yesterday I got a letter in the mail saying they needed my bank statements. I contacted the woman in charge of my case and she said she didn’t have them. I had her look again. She still didn’t have them.

What the fuck!?! They lost my bank statements for all of 2015!!

And now they want another copy. I know they want that copy before they’ll give me benefits, but is it worth it? Because honestly, I don’t know that it is. I’m not sure I’ll be able to use Section 8 anyway. And what if they lose them again? I was so unnerved that I didn’t even want to mail those statements, so I hand delivered them to the office. I really couldn’t have done more.

I’m not sure what I’ll do, but I know I’m pissed. And I’m going to let them know that. Because this is COMPLETELY UNACCEPTABLE!


Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.


Freaking out about the possibility of Section 8

November 27, 2015

Life has never been easy or predictable. At one point I thought it was, but back then I assumed I’d have my PhD, be married and have kids by the time I was 30. Now I’m well past 30, I haven’t spoke to that guy in 13 years, there are no kids, and I never did finish the PhD. I have no regrets. I’m just saying, life is unpredictable.

And in case I dared to forget it, the last few hours have reminded me all too clearly.

Life has been less certain than ever since I left my job 4 years ago. I can’t believe it’s been that long. Still, after a ton of work and effort, research, new doctors, new treatments, and fighting with insurance companies, I finally reached a point where I felt I might be able to do a little part time work. I was nervous, but also hopeful. It would be so nice not to have to worry about being on benefits that didn’t cover all the bills.

Today I did some work on that new business. I was feeling really excited about it! At 4pm I was jazzed, telling my mother all about my new plans and progress, outlining some next steps for myself, and imagining the possibility that this might actually work! At 5:30 I decided to check the mail. At 5:35, everything changed.

I had an unexpected letter.

I’m near the top of the waiting list for Section 8, so they want to start getting my paperwork ready and have an interview with me. Holy fuck! What just happened???

For those who don’t know, Section 8 is a housing voucher program. If you earn less than a certain amount, you’re eligible. Typically, you then pay 30% of your rent and the government pays the rest. There aren’t a lot of vouchers and the waiting list is long. When I signed up, I was told the wait was 3-4 years, so I put it out of my head. Whenever it popped back in, I reminded myself that I had a long wait and shouldn’t plan for it. And now, a year and a half later, it seems like it could soon be a reality. Sounds good, right?

Of course, like with anything, there are a few catches. For one thing, if you start earning more, then you lose the Section 8, and I don’t know what happens then. Would I have to move? And to use it in the first place I might have to move, and my choices would be very limited. Not all landlords accept Section 8 vouchers and I don’t know if mine does. Many don’t. Then there’s the problem that there are rental limits, and they’re pretty low for this area, so that makes it significantly harder to find a place.

Of course, this is just what I’ve heard and read. The truth is, I don’t know a lot. I have so many questions, but I got the letter at 5:30pm on a Friday, of course, so I need to wait all weekend before I can call and ask any of them.

So now I’m wondering, is this a good thing? It seems like it should be a good thing. If I’m doing the math right, this would mean I could almost cover all of my bills every month! There would be a small gap, maybe $50-$100 per month, but I could handle that. I get paid for small jobs here and there, and I get birthday and Chanukah checks, so I’m sure that wouldn’t be a problem. And would it be amazing to not have to worry about money?!? Ok, sure, I still wouldn’t have anything extra. It’s not like I could suddenly start eating out more, buying more clothes, or traveling. But it’s not like I really have to do any of those things anyway. So…. maybe this is good?

I’m nervous. I’m so used to things going wrong that it feels like there must be a big catch here that I’m not seeing yet. But then, what if there isn’t….?

If you’re on Section 8, what has your experience been like? What questions should I be asking? What should I know?

 


The problem with SSDI’s trial work program

July 28, 2015

When you’re on SSDI (social security disability insurance) the presumption is that your disability prevents you from working. Ok, I get that. But what if you want to return to work part time or full time? Ah, that’s and interesting process.20120809_220808

Everyone gets a different amount of money through SSDI. The formula is based on how much you paid into the system, and that in turn comes from the salary you earned and over how many months you earned it. You might be getting $900 per month or $1800 per month. If you’re on SSDI for more than 2 years then you’re eligible for Medicare, which is health insurance. You’re also more likely to be eligible for other benefits.

Now, what happens if you start doing some work? Well, at a certain point the SSA (Social Security Administration) decides that you’re able to support yourself. That point is a set number. It’s not a percentage of your benefit. Nope. It’s a set number: $1090 per month right now (this can change each year.) So if your benefit is $900 and you start earning $1100 then you lose SSDI and Medicare, but that might be ok with your extra income if you’re earning $1100 every month. You might only earn it occasionally, though (more on that in a bit.) But if your benefit is $1800 and you earn $1100, then you lose SSDI and Medicare and, unless you have unearned income from some source (like a spouse, alimony, or investments) then you’re probably screwed.

That’s how I feel now: screwed. I’m ready to do some small amounts of work, which is exciting in and of itself! I recently earned around $1100! This is very exciting! If it was all in 1 month, though, it would count towards my return to work trial period of 9 months total. Those total 9 months are spread out over 5 years, so I could work for 2 months per year, and still lose my benefits. That’s not good! Luckily for me, it was spread out over 3 months, at an average of under $400 per month. What a relief!

But wait, isn’t there something wrong with the system if I feel relieved to earn less money? Shouldn’t the goal be to get me back to work so that I don’t need benefits?

What if I make more than $1090 per month for 3 months this year? Then what if the same thing happens again next year? I’d stop working altogether so I wouldn’t risk going off benefits. I can’t afford to have 0 income, and I definitely can’t afford to lose my health insurance!

Instead, the system should encourage me to work part time with the hope that I would build up to more part time work or even full time work! The trial work period should only cover a short timeframe, like a certain number of months worked in a 1 or 2 year period. There should be a grace period for Medicare.

But with the current setup, I’m scared to attempt to go back to work. What if I try to work, lose my benefits, and then fail to continue working? Yes, there’s a grace period where I can get back on benefits, but it’s short. And I’m scared. It took me more than 2 years to get on SSDI in the first place. I can’t take a chance on losing it.

And that’s why the system doesn’t work.

Have you felt the same way about SSDI? How do you handle it? Do you hold back on the amount of work you do in order to stay on benefits?


The sad math of getting off benefits

March 15, 2015

Once upon a time there was a woman who worked most of her life. She babysat at 12, worked summers starting at 14, got good grades in school while doing a work-study program, went to college and graduate school, held many jobs during school and held more after each graduation, and 3-15-2015 1-59-07 PMalways did her best. One day she got sick. She was too sick to work. The government said they’d give her a small amount of money (after much fighting and pleading on her part.) Some people said she was lazy for not working harder, but she knew better. She was just too sick to work. Besides, all those years that she worked she paid into the fund that was now paying her. She worked on improving her health. One day she felt that she was ready to earn a small amount of money. She wondered what would happen if she ever wanted to earn her own living again. So she did the math….

I can accept that I might never be able to get off of benefits. I don’t like it, but I can accept it. My health has improved and stabilized to a point that I’m happy with. Yes, I would like to feel better, but if I never do, I can manage at this level. The thing is, that could be a problem financially. Thankfully, 20120809_220808social security disability insurance (SSDI) allows recipients to earn up to a certain amount each month while keeping benefits. I believe right now that amount is $1050. If I could earn the maximum, I could get by. Barely.

But the truth is, I’d love to get off of benefits if I could. I have always been self sufficient, and I would like to return to that. I prided myself on my independence. On top of that, I have control issues. It’s no wonder, when the biggest thing in my life – my body – is so out of my control. I hate the idea of relying on the government for my income. As I mentioned the other day, some politicians have suggested cutting SSDI by 20%! I’d much rather control my own income and larger financial situation. Sure, a boss can always fire me, and working for myself is no guarantee, but it still feels safer. That’s how control issues work.

So I decided to do the math, just out of curiosity. It started slow: how many hours each month would I need to work in order to earn $1050? Well, at $10 per hour I’d have to work 100 hours. That’s 20 hours per week. Well, that’s not happening any time soon. But I could probably earn $20, so that’s 50 hours/month. Ok, that’s more like it. I might be able to manage that in another year or two. But I can earn more for some of my skills, like my financial work, so maybe I could average $30 per hour? Somewhere in there I’d lose a few of my benefits, like fuel assistance and food stamps, but I’d more than make up for that. I played around, and felt ok about the options.

Then I started doing the math on what it would take to get off of all of the benefits. And that’s where it all fell apart. First, I’d have to replace my SSDI income. Ok, that’s tough, but I might be able to manage that at some point. Then I’d have to pay for health insurance, since I’d have lost both Medicare and Medicaid when I started earning more money. Well that’s stretching it, but I could still manage. Maybe. Eventually. It felt tight, but doable, until I remembered: taxes! SSDI income isn’t taxable, and I doubt that $1050 per month would be taxed much, if anything. But at these new income levels, I’d have to pay taxes. When I add it all up, I figure I’d need to earn at least $4000 per month. At least. And that’s just to break even!

So I can earn $1050 per month while getting SSDI, or I could earn at least $4000 per month, and the two would be equivalent from a financial point of view. But one way I’d have time to take care of my health and the other way I wouldn’t. Realistically, I just can’t see working full time again health-wise. It would have to be part-time work. And as much as I want to get off of benefits, it doesn’t seem worth it if I’d be breaking even, so I’d need to earn more to make it worthwhile. And that puts me back at my old salary (which was just slightly over $4k/month.)

It would be nice if there was a gradient of some sort. Like, if I earned $1050 I’d get full SSDI, and if I earned $1200 I’d get $150 less than full SSDI. That would be a great way to transition. But as it stands, it’s all or none.

I’m not saying it’s impossible that it’ll ever happen, but it sure feels unlikely that I’d be able to earn my old full time salary while working part time.

If you’re on benefits, have you ever considered getting off of them? Have you tried? How do you feel about it? Please share your thoughts and experiences in the comments.


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