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.


Yay for food stamps! Well, sort of….

October 14, 2014

Me: “Great news! I got food stamps!”

*pause*

Me: “Isn’t that great?”

Her: “Um, sure?”

A few years ago I wouldn’t have been excited for food stamps. But things change. They change and we have to go with the flow, and the flow leads me to be thrilled about getting food stamps!

My family and friends are trying to be supportive, but they see this as a bad thing. Let’s face it, there’s a certain stigma that goes along with food stamp benefits. My mother immediately said, “You aren’t posting this on Facebook, are you? Because people can be funny about these things.” That was her nice way of saying, “People can be assholes about someone getting the benefits they need.” She didn’t want me to get attacked online. Many friends have been unsure how to react. Except for my friends in my chronic pain support group, that is. Many of them also have financial difficulties due to their health, so they appreciate how much of a difference this can make. But the others just don’t feel right saying “Congratulations!” for this.

Last month I wrote about missing out on thousands of dollars in benefits because I didn’t know to apply for them. I immediately signed up for Section 8 and am now on the very long (3-4 years) waiting list. I applied for fuel assistance and will find out about that in 2 more weeks. And I applied for SNAP, formerly called food stamps. I gathered papers just 2 days after my grandfather’s funeral because I had already applied and the paperwork deadline was fast approaching. I didn’t want to miss out. When I had looked into SNAP a couple years ago, when my finances first took a dive after I realized I wasn’t going to be able to return to my job, I wasn’t eligible. They had an asset limit of $2000. I had saved up more than that when I worked, so I wasn’t eligible.

Last month, when my friend told me about benefits, she mentioned SNAP. I figured it couldn’t hurt to look it up and, low and behold, they’d changed the requirements! My assets no longer counted against me! I could use those assets to pay my rent, and still apply for SNAP because of my low income. What a surprise! I wondered when that change occurred. Could I have applied a year ago? Two years ago? Wondering didn’t help, but applying would, so I filled out the application and went through the process. And then I waited.

After not leaving my apartment for a few days last week due to feeling like crap, I finally went downstairs and checked the mail. And there it was: a letter stating that I’d been approved and was now receiving benefits! I went to the grocery store the next day and used my new card – and it worked! I got a receipt that included my balance. It was all there.

I keep my grocery costs low, thankfully, and this will just about cover my monthly food bills. They back-dated the benefit to 30 days before my application, so I have that money too. I’ll use it to buy things like toilet paper and toothpaste, if those are allowed.

Can I afford all of my expenses now? No. Not even close. I’m still using my savings to pay for quite a bit. But every dollar helps. And I’m incredible thankful for these dollars. So as much as I wish I didn’t need SNAP/food stamps, as much as I wish I didn’t come close to the eligibility requirements, the truth is that I do need it, so I’m thrilled that I have it!

Do you get benefits? How do you feel about it? How to people react when/if you tell them?

Update: Do as it turns out, I can’t use my benefits for toilet paper and toothpaste. But I’m sure I’ll use them on groceries over time.


A social security and long term disability update to make your hair stand on end

July 8, 2014

From the first day I decided to leave my job almost 3 years ago, my top priority was to get my health back on track. Unfortunately, various forms of insurance have worked to, intentionally or not, make that as difficult as possible.

My health is my priority, but money is still necessary. I need it to pay for any healthcare that insurance (when I have it) 20120809_220808doesn’t cover, and also to pay for little “luxuries” like rent, electricity, and food. When I left my job I had short term disability insurance. I filled out one short form and had benefits. It was nothing short of miraculous! Unfortunately, the miracles ended there.

If you’ve been following this blog for a while, you know the basics: I was denied long term disability insurance (LTD,) went through a long, frustrating, stressful, difficult, expensive appeal with a lawyer, and was finally approved. What you don’t know is that when they did their let’s-see-if-she’s-still-disabled review of my medical records, they denied me again. They said I was well enough to work. Of course.

Thanks to the LTD fiasco, I had my employer-provided health insurance, then nothing, then the private insurance again (they were trying to mollify me after a big error on their part), then nothing, then MassHealth (our state medicaid), then private insurance, then nothing, and now MassHealth again. And yes, that’s all been in the last 2.5 years. And I think I left out a transition. It’s been hard to keep track, but I have a record of it someplace….

If you’ve been following this blog for a while, you know that I applied for social security disability insurance (SSDI), was denied, appealed, was denied again, appealed again, and got a hearing before a judge. What you don’t know is that…. I WON!!!! Yippee!!!!!!!!!!!!!

I was certain I’d win that last round of LTD, and then I lost. I was certain I’d lose the last round of SSDI, and I won. So what have we learned from this? We’ve learned that my instinct for insurance appeal outcomes sucks. We’ve also learned that the system is horrible.

I told a bunch of friends about this, and I mentioned that I’ll have Medicare (the federally-run program) for health insurance now, in addition to MassHealth. A couple of friends who’ve been through this rushed to remind me that there’s a waiting period for Medicare. Yes, if you’re so sick that you need SSDI, they make you wait another year and a half before you get health insurance. Brilliant system, eh? But the ridiculous part is that I’m long past the waiting period! My benefits are retroactive, and I was eligible for Medicare 4 months ago!

Of course, nothing is ever easy with any of this bullshit. So even though I got the judge’s decision several weeks ago, I still don’t have benefits. I was going to wait to write this post until after I knew more, but I found out yesterday that my social security office has 60 days from the date of the judge’s ruling to process my file. It seems silly to wait another month and a half to write this, so here I am, typing about the benefits I’ve been told I’m owed, but which I don’t have. I don’t have the back payments the government owes me. My lawyer does not have her fee. I do not have Medicare. I can not use the ruling to get onto the disability-related portion of MassHealth or to get any of the other random benefits I would get with it, like a reduced-fare subway pass. Worst of all, I can not see new doctors (and I need several) under a stable, established health insurance. This probably won’t be an issue, but after everything I’ve been through, it makes me nervous.

Too much stress is bad for even the healthiest person. It’s much worse if you have an autoimmune disease, and I have several. It’s even worse if you have adrenal insufficiency, which I have. So the stress has literally been holding back my recovery. Last year, one of my medical practitioners told me that she didn’t expect me to make much more progress until the LTD and SSDI issues were resolved, because my high stress levels would impede any treatment. She agreed I was handling the situation as well as could be expected, but anyone going through it would have a lot of stress, and therefore a lot of stress hormones.

Then consider the number of hours I have put into this. I tried to keep track at one point, but it was too depressing to see. I was constantly submitting requests for medical records, following up, and reviewing the records. I had to stay on top of doctors who didn’t fill out forms completely or on time. I ferried paperwork to and from my lawyer. There was so much crap to deal with. Some weeks I didn’t do any, but others it was like a part-time job. But unlike a job, the “payment” would be either nothing, or maybe the money that I rightly deserved.

And don’t forget the financial cost. Yes, I spent money on a lawyer. I also had the uncertainty of income. A friend with chronic illnesses sees a therapist who isn’t covered by insurance. I can’t do that. She gets regular massages. My doctor and physical therapist want me to do that, but I can’t afford it. Maybe I couldn’t have done all of that anyway, but I could have made long-term decisions if I’d known I’d get the benefits I qualified for. I have worried about money more in the last 2 years than I ever have before in my life.

And now? Now it isn’t perfect. Now I’m still waiting for everything. Now I know that my monthly SSDI payments aren’t nearly enough. If I can’t return to work at least part time within 2 years (when the SSDI pack payments and my savings run out), then I will have to move in with my parents.

But now I also have less stress. I have more time. I can finally do what I’ve wanted to do for the last 2.75 years: I can make my health my #1 priority.

Please use the comments to tell your own SSDI stories. Vent your frustrations. Share your experiences. For those of us who’ve been through this, we might as well lend an ear to one another. Or write any other comments you’d like.


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