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.

6 Comments | Expectations, Frustration, Limitations, Politics, Raves | Tagged: , , , | Permalink
Posted by chronicrants

I lost thousands of dollars of financial assistance because I didn’t understand the system

August 30, 2014

I grew up in a middle class family and lived a middle class lifestyle after I left my parents’ home. I earned a decent enough living. There was a lot I couldn’t afford, but I never worried about paying rent or buying food.

Then I got sicker.

It’s been a roller coaster since I left my job almost 3 years ago. I had short term disability benefits, then nothing, then long term disability benefits, then nothing, then social security disability benefits. During the long periods of “nothing” I knew there was the possibility of getting long term disability benefits and/or social security disability benefits (SSDI.) I didn’t know what I’d end up with, so I didn’t know how to plan. And besides, I kept hoping that I’d return to work soon.

Now I have SSDI and no thoughts of returning to full time work very soon. I hope to do some part time work to supplement SSDI, but even that has to wait until I feel a bit healthier. And I just can’t live on my current benefit and keep my current lifestyle. After paying for food, transportation, utilities, and, especially, medical expenses, I have about $100 per month left for rent. Obviously, that won’t work. Even if I got roommates. So what are my options?

  • I could move in with my parents. They’d take me in. I’d have to move an hour away from all of my friends and doctors and be a 30-something living with my parents, but it’s an option.
  • I could buy a condo. I still have savings from back when I worked. Unfortunately, I’m spending them on rent now. Instead, I could buy a condo. But then I’d have HOA fees ($200-300/month) and upkeep, and I don’t have the budget for that.
  • I could buy a house. But then I’d have a mortgage and upkeep. No good.
  • I could buy a 3-family house. I could live in one apartment and rent out the other two and use the rental income to pay the mortgage and upkeep costs. This has some appeal. I’ve looked into it. But 3-family homes are really expensive around here, and even if I felt comfortable taking on such a big mortgage, I wouldn’t qualify for it. And I’m not ready to move out of the Boston area.
  • I could push myself to go back to work before I’m ready. But obviously that has disaster written all over it.
  • I could just keep on spending my savings and hope I’m well enough to return to work before they run out.

I’ve been sort of stressing about this. I feel like there should be another option. And then talking to a fellow disabled friend yesterday, I found it: financial assistance! When I left my job two years ago I looked into my options for help, but I was stuck trying to interpret things online myself. I didn’t know who to ask for help. I checked around with friends, but it wasn’t helpful. And since I didn’t know what my financial position would be going forward, I gave up. Bad move.

On Tuesday, as soon as the long weekend is over, I’m going to visit my local house authority and sign up for section 8 housing. The waiting list is long, and I’m pissed as hell that I didn’t sign up 2 years ago. I could have already been on the waiting list for 2 years! Since the wait is longer than that, I should have done it. But I didn’t realize. I thought that if I got long term disability benefits, I’d get kicked off the list. And I didn’t want to have to live in section 8 housing. As it turns out, those LTD benefits would have still had be below the income limit. Who knew? And many section 8 vouchers allow you to live in any housing, as long as it meets certain requirements (generally that it’s around the median rental rate for your area, and not some huge luxury unit, and that it’s well maintained and habitable.)

And then my friend told me more: I qualify for fuel assistance! Having heat isn’t optional in Boston. Without it, pipes freeze and burst. Even more, you can freeze to death. You must have heat. And apparently I can get help paying for it, even though it’s included in the cost of my rent! She also said she gets help paying her electric bill – that had never occurred to me! Best of all, she told me where to go to find out more about these resources.

Since it was a Friday evening, I couldn’t call any of the offices, so I went online. Now that I knew where to look and what to look for, there was so much information! She got the information from her local housing authority, so I found their web site, then the site for my town’s housing authority, and I just followed the links from there. I still need to talk to someone to get questions answered, but boy do I feel better. If only I’d done all of this two years ago, though! I’m kicking myself that I didn’t.

I’m including below some of the useful links I’ve found so far. Clicking these links will open up new windows. As I find more, I’ll add them later. These are for Massachusetts. If you’re in the U.S., maybe these will help you find similar resources in your own state.

I’ve already missed out on thousands of dollars of financial assistance by not signing up for all of this two years earlier. What about you? If there’s financial assistance you could be getting, don’t make my mistake! Sign up now! And please help me make further mistakes by telling me what else I should be doing!

What other financial assistance should I be looking for? I welcome any and all advice!!

~~~~~~~~~~~~~~~~

Section 8 centralized waiting list: https://secure.massnahro.org/Section8LHA_Internet/WebPages/Registration/Home.aspx

Types of rental assistance: http://www.mass.gov/hed/housing/rental-assistance/

Fuel assistance agencies: http://www.mass.gov/eohhs/docs/dta/c-dta-fuelassist.pdf

Fuel assistance overview: http://www.massresources.org/liheap.html

Section 8 explanation: http://www.masslegalhelp.org/housing/types-vouchers

SNAP food assistance: http://www.mass.gov/eohhs/gov/departments/dta/food-assistance.html

4 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Politics, Rants, Support | Tagged: , , , | Permalink
Posted by chronicrants

Sometimes health giveth, and sometimes health taketh away

July 26, 2014

My CPAP machine broke. It’s not the worst thing that has ever happened to me health-wise, not the worst by far, but it sucks.

For a long time, probably years, I had undiagnosed and untreated UARS. It’s a form of sleep apnea. And it sucks. Oh wait, did I say that already? Oops. Anyway, when I started using a CPAP machine several months ago, I noticed a difference very 2014-04-23 11.03.16quickly. Within a week I had more energy. Over time I found I was sleeping deeper and feeling better. I was even breathing better during the day!

That why I was so disappointed when my CPAP wasn’t working as well last month. I thought I needed a new mask (I probably did – they only last about 3 months.) Thanks to insurance issues, it took a while to get a new mask, but by then, the machine didn’t seem to be working well at all. The company that provides the CPAP said they’d reset the settings. Problem solved! Or so I thought. Basically, the damn thing seems to be broken.

The CPAP is under warranty, so I’ll get a new one on Monday. I have an appointment. But in the meantime, I’m a wreck. After the first few nights of poor sleep I was definitely more tired than usual, but I was still functioning fairly well. Then last night it hit me. I’m completely fatigued. It’s hard to breath. My throat hurts. Sitting up to read takes too much energy, and typing this is a Herculean effort. As soon as I hit publish, I’ll need to lay down. I feel like I’m coming down with the flu, but I know I’m not. I know I’m not because I used to feel this way when I slept especially badly in the pre-CPAP days.

Thankfully, I don’t have anything too big happening in the next few days. I had to cancel some plans today. Friends have graciously agreed to come to my apartment tonight so I don’t have to go out. I’d hate to miss out on tomorrow’s activities, but if I do, it’s not the worst thing. I just hope I’m well enough to drive to get the new machine on Monday!

And I’m thankful for my health insurance.

Let’s face it, health insurance in this country sucks. Today is a great reminder of how bad my health was before, and how bad it would be without the CPAP. Without insurance, I would never have been diagnosed with UARS, and I certainly wouldn’t be paying for the CPAP machine. Without insurance, my condition would just continue to deteriorate. I won’t even think about what would happen with all the rest of my health conditions. I’ve ranted about the politics around health insurance before (just check out the politics category if you’re interested) so I won’t do that right here, but for those of us fortunate enough to have at least some semblance of healthcare coverage, let’s remember how lucky we are. Let’s hope we remain so fortunate. And let’s pressure our politicians to make sure others can receive care as well. Because no one should feel so horrible when there’s a perfectly good treatment available.

2 Comments | Expectations, Frustration, Healthcare, Limitations, Medication, Politics, Rants, Support, Symptoms | Tagged: , , , | Permalink
Posted by chronicrants

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.

21 Comments | Decisions, Expectations, Frustration, Healthcare, Medication, Milestones, Politics, Rants, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

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