Totally. Freaking. Out.

June 2, 2018

I just got a letter in the mail that’s bad. Very bad.

I’ve been having a hard enough time lately. I’ve been feeling really lonely and isolated. I want to date but don’t feel up to it. My birthday is coming up and I feel time passing me by. My youth is disappearing and I haven’t had a chance to live it. That’s all horrible enough, and I’ve been struggling to deal with it.

But then the letter came.

From the Social Security Administration.

Once upon a time, I became too sick for work, so I applied for social security disability benefits. I was denied.

I appealed. I was denied.

I appealed again. I went before a judge. And finally, I won! That process took two and a half years. Two and a half years of trying to prove that I really was as sick as I was. I finally was able to breathe in July 2014. I was relieved, and could finally focus on my health. During that time I was so stressed out that it was hard to make any improvements in my health.

I knew then that I would face a review of my case every few years, but time went by with no review, and I mostly forgot about it. Occasionally it came to mind, but not often. Thanks to budget cuts, they didn’t have the staff to do frequent reviews.

But today I got the letter in the mail: they’re reviewing my case. I have 30 days to mail in the form. Shit shit shitty shit shit.

It’s a deceptively simple form, just 1 page double-sided. But the questions are hard. List doctors have I seen, tests I’ve had done, and evaluations I’ve had in the last 2 years? And there’s only space for THREE? Are they kidding?!? Which ones should I list? This is why I need a lawyer.

Too bad my former lawyer isn’t practicing anymore.

I have 30 days to find someone new, interview them, hire them, set up a meeting with them, and get their help with this shit. Because this time, I’m getting a lawyer from the start. If they’ll work with me.

Is my health better, the same, or worse? Um, some aspects are better, some are worse. But what will my doctors say if they’re questioned? You see, these questions are tricky!

And it gets worse, because I there is a very likely chance I will be denied, and will have to appeal. And what happens then? Will I lose my Medicare health insurance during the appeal? If I do, then I will also lose MassHealth. And without steady income coming in, I could lose my affordable housing, for which I must prove financial viability. As it is, my income is “too low” for affordable housing, and I had to use my assets as proof of my ability to pay. Without any income, will that be enough?

And what will I do without any income?! I will have to start cashing in my investments pretty soon. As it is, I manage to sort of make things work, but the numbers in my bank account have been slowly moving down. This will make them move down a hell of a lot faster.

There’s a chance I won’t be denied. An incredibly slim chance. I’m not holding my breath for that.

What can I do in the meantime? It’s a Saturday evening, so I have to wait a day and a half before I can even call a lawyer, and who knows how long it will be before I can speak to one!

I’m trying to stay calm. I’m going to ignore the rest of the things I wanted to do tonight (except my physical therapy, because my health doesn’t magically improve just because the government is being a pain in the ass) and try to rest with tv and knitting, two things I find relaxing.

And I will hope that everything works out. Maybe tomorrow I’ll buy a lottery ticket. Because nothing would make me happier right now than knowing I can just throw that form in the trash because I don’t need it. Or maybe I can marry someone rich (as if I’ve had any luck in the relationship department anyway.) The thing is, there just aren’t that many options.

Happy birthday to me.


Defining “affordable”

November 1, 2017

Only a few people know that I live in “affordable housing.” It’s not something that I want to publicize because of the stigma involved. One friend recently asked me what my rent is, and was shocked at the answer.

That’s because it’s not all that “affordable.”

And it’s about to get worse.

There are different types of “affordable housing.” The kind I live in works like this:

  • I live in an apartment complex.
  • At least 10% of the units need to be part of the “affordable housing” program so that the developers/owners get tax breaks.
  • The rents are set by the state, based on my region. It’s based on a percentage of local earnings or housing rates or something. I’m not sure, and it doesn’t really matter, because it works out the same way.
  • Every year, the state determines how much rents will go up in my region.

As my lease is coming up for renewal, I filled out the 25-page questionnaire that reminded me of the colonoscopy I once had. They need A LOT of information. I have to account for every deposit into my bank account so they know my income is within the affordable housing limits. Cash a check from my parents? That counts as income. Get a job? That counts as income. Sell shit from my apartment? That counts as income. It’s invasive and unpleasant, but I do it so I can live here.

When they gave me the form, I was also told when next year’s rent will be. It’s a lot. Cheaper than what my neighbors in this complex pay, but a lot. Over $1400, not including utilities. Now I live in the Boston area, so rents here are high. Still, this is tough for someone who isn’t able to work full time. (Actually, my income is below their minimum requirements. The only let me move in because I have enough money in savings so assure I can cover my rent. Sadly, a lot of people earn too little to qualify for “affordable” housing!)

The increase bugs the hell out of me for one simple reason: it is a 5% increase! Yes, my rent is low compared to my neighbors, but 5%!

Rents in the area have been skyrocketing for years. My social security disability payments will not go up at all this year. I get the maximum SNAP (formerly food stamps) benefits, and this year they went down by $2 per month because the maximum amount was lowered. None of my other benefits are going up. And let’s say I was working. I might be lucky enough to get a 2-3% raise. Maybe, and I mean maybe, a 4% raise. Maybe. But no one gets a 5% raise.

The cost of food is going up. Housing costs are going up. And benefits are going down. Politicians are saying that these programs cost too much, and they’re right. But instead of finding a way to fund the programs or fix the system, they are reducing benefits to people who need them.

And I am one of the lucky ones. I have enough money in savings to cover my costs for a while. My part time work covers some of my expenses. My parents help out a bit. It all works out. Sure, I almost never get to spend money on fun things, but at least I’m getting by.

I was telling someone that the waiting list for Section 8 housing is now 8-10 years. I am told I should expect to wait another 3-4 years to get into the program. Of course, I was told that when I signed up 4 years ago. She asked what people are supposed to do in the meantime.

And that’s the catch. The “safety nets” only work for people who aren’t truly desperate for them. Yes, people who are homeless get moved up on the waiting list for Section 8 (which is one reason why I get pushed down the list.) But it’s not enough. Someone shouldn’t have to be homeless before they get help.

These things are decided by people with good jobs earning steady paychecks. They presumably can pay for housing and food from those paychecks. So maybe they simply don’t understand what “affordable” means? I’d rather think they don’t get it, than that they don’t care.

Because raising rents based on what the community is earning or paying might sound good in theory. But a 5% rent increase is a lot for someone who wasn’t making ends meet before, and isn’t getting any sort of increase in their own income.

And I’m one of the lucky ones. What does that say about our system?


Have you called your senator today?

June 29, 2017

HELP!

In the chronic illness community, there seem to be two groups of people:

  • People in the U.S. who are terrified of losing their healthcare or of it becoming completely unaffordable.
  • People outside the U.S. who are wondering what the hell is wrong with us.

These are some scary times.

If you don’t know what’s going on, here’s the basic summary. Our political system has become incredibly divisive. It’s been divisive for a long time, but there are no longer congresspeople working with folks from the other party. Politicians go out of their way to hurt the other part just for the sake of hurting them. Even if politicians from different parties agree with each other in private, they won’t do it in public.

When Obama became president, the Republicans vowed to do whatever it took to prevent him from being reelected. But he was reelected. Still, they could destroy everything he had accomplished. For 7 years they talked about repealed the healthcare plan he put into place. They talked big. And then the day came when they had to actually do what they’d said.

So now here we are with a Republican-majority congress and a Republican president. They have no excuse for not repealing Obama’s healthcare plan. The thing is, they suddenly realized that wasn’t so easy to do. People like it! They use it and rely on it! They need it.

But after talking big, the Republicans can’t just say, “Oops, turns out we can’t come up with something better that will make our richest supporters happy, so we’ll just keep what we’ve got.” No, they have to get rid of it. And the plans they have been coming up with instead are cruel.

Yes, cruel. That’s no exaggeration. The House’s plan would cause 23 million people to lose health insurance. The Senate’s plan would cause 22 million people to lose health insurance. Preexisting conditions could cause your rates to skyrocket. A “preexisting condition” could be anything from cancer to lupus to migraines to pregnancy.

The Senate’s plan would remove access to free birth control, abortions, and maternity coverage. That’s right. So you won’t have any monetary help avoiding pregnancy, ending a pregnancy, or getting medical treatment during a pregnancy, never mind actually giving birth to a baby. Cruel.

Both plans cut billions – yes, BILLIONS – of dollars from Medicaid. Medicaid is the government-run healthcare program for the poor and disabled. You know, the folks who most need the help.

As for “regular” folks with jobs and steady incomes, they’re safe, right? Not really. Predictions are that their premiums, deductibles, and co-pays will go up, even while the covered services (like contraception, abortion, and maternity care) are reduced.

So who benefits? The rich will get huge tax breaks. Insurance companies will also save money.

Um…. Yeah, I’m usually speechless at this point. For about a minute. Then I start yelling again.

Remember, these bills are hugely unpopular. But they can still pass. Because the Republicans would rather do something unpopular than nothing at all.

As for me, I currently have two different health insurances. My primary insurance covers 80% of each bill and the secondary insurance – Medicaid – covers the other 20%. If any of these bills pass, I will likely be able to keep the primary insurance, but there will be limits placed on it, so it won’t cover as much as it does right now. There aren’t any details yet. I don’t know if it will still cover the CPAP-type machine that I need for my sleep apnea, the many doctors’ visits, the blood tests, or the MRIs.  I would lose the secondary insurance. I might or might have access to other secondary insurances that I could pay for myself. Right now, those cost about $250 per month – money I don’t have available. But that’s right now, and those prices will go up under these new Republican plans. How would I pay for it?

Shit.

This is bad. Horrible. Catastrophic.

Cruel.

So what can you do? I’m so glad you asked! Here’s what you can do:

  • If you are in the U.S., call your Senators! Tell them to vote against these bills! Tell them you want to keep the Affordable Care Act just the way it is. If you can’t call, send an email. Their contact information is right here: https://www.senate.gov/senators/contact/
  • If you are in the U.S., call other Senators! There are many who are on the fence, and we need them with us on this!
  • No matter where you are, ask your friends in the U.S. to call their Senators!
  • Post about this on social media. We need awareness! Too many people don’t realize what’s happening or how it might affect them. And that’s a problem. On the other hand, if the 22 MILLION – that’s 22,000,000 people! – all called their Senators, and each got a friend and/or family member to call also, there’s no way the Senators would vote for this. They wouldn’t want to risk losing the next election, after all.
  • [Edited to add on 7/5/17:] Attend any town halls that you can and make your voice heard! These town halls have a HUGE impact, not only in the media, but on the senators themselves. If they get a lot of feedback at these town halls, they might very well switch their votes to be against this heinous bill.

I’m sure my Facebook friends would be sick of my myriad posts on this subject if so many of them weren’t also concerned. Many are in much worse situations than me. Some are just as disabled, but will lose ALL of their health insurance coverage if this passes, and they don’t have any savings to manage without it.

Remember, 22 million people will lose health insurance if these bills pass. But how many of those 22 million will survive? Because people will die. That is a fact. And while I have no doubt that history will prove me right on this matter, I don’t want to be right. I want to be alive. How about you?

What are you waiting for? If you feel up to it, take 5 minutes RIGHT NOW to call your Senators, call other Senators, ask your family and friends to call Senators, and post on social media. Because unless we take action, millions of people will lose access to healthcare.


How bureaucracy continues to screw with me for being disabled

May 31, 2017

Remember this post from a year and a half ago when I was told I was nearing the top of the waiting list for Section 8? Well, a year and a half later I found out they were just screwing with me.

The other day I was thinking about what I would do if I suddenly got Section 8. At this point, it would make a huge difference. I could stop trying to work, and stop feeling overwhelmed all the time. I could actually cover almost all of my expenses. I could focus more on my health. Good things, right?

The last time I asked about my Section 8 status I was given vague non-answers. A year and a half ago they said I was near the top of the list and I spent hours filling out paperwork, some of which they lost, and I had to redo. A few months later they had me do more paperwork with my financials for the latest year. And then I heard nothing.

I checked in a few times, but they didn’t tell me anything.

After thinking about how helpful it would be, I decided to try again. I recently moved, so I called the housing office in my new town. I learned a few important things:

  1. When I signed up the waiting list was 4-5 years long. Now they’re saying it’s 10 years long.
  2. Because I moved, I’m no longer going to get a voucher from my old town. I mean, it’s allowed, but it won’t happen. Every town gives priority to people who live and work in that town. So my new town will give me priority over others, but of course, a lot of people are ahead of me on that list.
  3. I have another 2-3 years to go. Maybe more.

The woman I spoke to was confused as to why I was brought in to fill out paperwork. She said I was far too low on the list for that. And that was yesterday. I was obviously much lower on the list a year and a half ago!

This means a few things to me:

  1. Filling out that paperwork was a waste of my time.
  2. Filling out that paperwork was a waste of the housing office staff’s time and therefore money. Certain politicians say that people like me are wasting taxpayer money. Nope, not me. Believe me, I’d have rather not done all that work for nothing! The office wasted the money.
  3. I have no chance of getting Section 8 any time soon so I have to continue to try and earn money myself.

This sucks. A lot. At a friend’s urging, I will contact my state rep, and maybe my U.S. rep, to see if they can find out what’s going on. The thing is, they might find out, but I doubt it will help me.

I was jerked around. I was given false hope. And there is no discernible reason for this other than incompetence.

I am so sick and tired of poor and/or disabled people being screwed with and disrespected. This has to STOP!


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