Goodbye food stamps

November 26, 2018

Edit 11/27/18: I must apologize to all of you wonderful readers for the errors in the original version of this post. As it turns out, the income limit for food stamps was not cut in half. The person on the phone didn’t know what they were talking about and the appropriate information was missing from their web site (both of these issues have been reported.) So that part is good!

However, I have still lost my benefits for now. The reason is that in determining the income limit, medical deductions are not counted. WTF?!?! My income had gone up, and I am now $20 over the limit. Just $20!!! However, my income has since gone down again, so I can resubmit paperwork to get my benefits reinstated. It’s a lot of effort, but worth it.

But think about how hard it was to learn this. I got a letter with misinformation. I spent 45 minutes on hold to speak with someone who gave more misinformation. I spent the night thinking my benefits were cut off. Then this morning someone called me back and explained it all. Why wasn’t that explanation put in the original letter?! The system is broken in so many ways. Not to mention the part where I lose $172 every month in benefits because my income is $20 too high. If they want people to get off benefits, this isn’t the way to do it, because this just encourages people to earn less so they don’t fall off the benefits cliff! Now back to the original post….

Benefits in the U.S. (and many other places) are majorly screwed up. Today I’ll tell you how I lost my food benefits, which I just learned about a few minutes ago.

When I first became disabled, I wasn’t eligible for the SNAP program (formerly called food stamps) because my assets were too high – meaning I had too much money in the bank. But then they changed that, and I was able to sign up. For 4 years I have received money every month to buy food.

The limits are strict. I can only buy certain kinds of food – nothing from the bakery, for example. And only food – no soap or toothpaste or toilet paper. Still, it helps a lot!

Until this year, I was getting the maximum amount for a single person in Massachusetts. It didn’t cover everything, which was worrisome. I’m small (around 125 pounds) and sedentary. How would someone bigger and more active manage on that small amount? Luckily for me, I have savings, so I used that to make up the difference. Friends of mine went to food pantries. Sucky, but that’s our system.

Earlier this year my benefits were lowered by $20. That sucked, but I knew it would go back next year when I filed my 2018 taxes, showing less income. It still surprised me that with my low income I wasn’t getting the maximum anymore. Again, a very messed up system.

And then yesterday I got a letter saying my benefits were getting cancelled. Part of the reason had to do with me not being disabled. Of course it was a weekend, so I had to wait. In the meantime, I did some research. New guidelines came out on October 1, but even so, I should qualify. So today I called. After 45 minutes on hold, I got someone. She didn’t know much and I had to keep correcting her. Finally, well over an hour after I’d called, it was 5pm – time to quit. She said she or her supervisor would call me back tomorrow. But I’d learned one thing: the income limit she used was half of what I was seeing online. I said that, and she couldn’t explain it. So after we hung up, I did more research.

In many states, there’s no asset limit, but in Massachusetts there is. Here’s how it works: if you’re not disabled, there’s an asset limit (about $2000.) If you are disabled, then there’s a higher asset limit (about $3350) but only if you earn more than a certain amount. If you earn under that amount, you can have any assets you want. If you earn over that amount, there’s an asset cap. A house doesn’t count. Cars don’t count. But money in the bank does count. I have enough in the bank to cause a problem if they look at my assets, but my income was always low enough that it wasn’t an issue.

And I’m glad for that money in the bank! It’s there for emergencies. It pays for medical expenses when there’s a month where they cost more. It will pay for my new car when my current car dies. It pays for a dinner out with friends once a month or a new sweater or two from the consignment shop. It’s what kept me from having to move in with my parents while I waited for over 2 years for SSDI to come through. I worked my ass off for that money in the bank. I spent my career working in nonprofit, which as we all know, doesn’t pay very well. And I was living in Boston, one of the most expensive parts of the country. Saving that money was NOT easy! I cut back on a lot of things to save that money. As my friend Rob said to me a few minutes ago: “You’re being punished for doing everything right except being able bodied.”

Because now that money in the bank counts against me.  But it shouldn’t.

You see, until October 1, the income limit was 200% of the Federal Poverty Level (FPL.) That comes out to $2023. That’s a tiny sum in this part of Massachusetts. Especially for someone who is disabled who could easily spend hundreds every month in health expenses. I was under that amount, so my assets were irrelevant. Then on October 1 they changed the income limit to 100% FPL. That comes out to $1012!

Think about that for a minute. In an area where a 1 bedroom apartment in lousy shape will cost at least $800 per month, the income limit is $1012. So if you earn $1015 and pay $800 for your apartment while you’re on a waiting list for Section 8 housing, you now have $215 to pay for food, medical expenses, transportation, and anything else in your life. It just can’t be done. So you have to dip into your savings. Let’s say your assets are just a bit over the limit, around $4000. How long do you think that will last you? A year if you’re lucky? Probably less. At that point you can now get on benefits. And if you have an problems where you need savings, you have spent them all and you’re now entirely fucked.

Or maybe you earn more. Maybe you earn $2000 and you have $10,000 in the bank. That’s plenty of money, right? Not really. It’s hard to live on $2000 in this area if you’re able-bodied. If you’re disabled, it’s not enough. You’ll have to take money out of savings each month. As soon as you have to pay for a car repair or two, or a couple of large medical expenses, your savings will be gone.

There’s no perfect answer. I get that. But to cut the income limit in half is cruel. To do so without warning anyone is heartless. To send out a form letter that doesn’t explain any of this and just cut off people’s benefits is both.

You know that safety net everyone is always counting on? Watch out, because the holes just got even bigger.

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Will today be the day to go outside?

November 20, 2018

On the one hand, I knew that going out 2 nights in a row might be too much. On the other hand, I thought I might be ready for it. And how would I know if I didn’t try? So I tried. And it could have worked. Could have, but didn’t.

Now, it’s not like I was out clubbing until 2am both nights. The first night I went to play board games, and got home just before 10pm. That would have been fine, except because I was out, I didn’t take my melatonin, and so I felt too awake to sleep. I ended up going to bed at 1am and only sleeping 6 hours. Yikes!

The next day I rested all day, then pushed myself to go out at night. I recently began volunteering for an organization I really care about. I do small things from home and attend meetings once a month. So far, I had only been able to attend by phone, but it was important to me to attend in person. So I went. I was tired, but once I was there I felt good! Still, I hadn’t finished the dinner I brought with me, and the small appetite should have been my warning. I got home before 10pm, but slept badly.

I knew I was pushing my limits. During the meeting I would occasionally cough. Just one little cough every 10 minutes or so, not the kind you get when you have a cold, but the kind that means I’m not breathing well. That’s because my lack of sleep the night before meant I hadn’t used my CPAP enough. After a second night of poor sleep, my sleep apnea was really causing problems. I woke up the next day feeling really blah. Was it my regular autoimmune stuff? Was I coming down with a cold? Was my autoimmune stuff preventing me from fighting off a cold? Only time would tell. I did the smart but boring thing – I stayed home all day to rest. So much for the errands I wanted to run and things I wanted to do around the house.

The next day I clearly had a small cold. Damn. I canceled my date and stayed in. Again. More tv. I wished I was reading a novel instead of an interesting-but-too-much-brain-power-required nonfiction book. I felt sort of queasy after eating, but not in the usual way, or in a really sick way. More in a my-body-is-trying-to-do-too-much way. Weird.

The next day I still had a cold and was still having mixed results with food. Time for more rest!

And each night I was sleeping badly. I was congested from the cold, so I kept having to take off my CPAP mask during the night. You know what’s worse than not sleeping? Sleeping without my CPAP. It’s true. I’d be better off staying awake. Too bad I didn’t. The exhaustion was crushing.

Still, after 3 days at home I was feeling better. The cold seemed to have cleared up much faster than usual. I took a short walk! I washed my hair! I put the pajamas and towels from the last few days in the laundry! I wanted to run errands, but figured I should rest. Instead, I cooked a nice but relatively easy dinner. I was on the mend!

Except after dinner I felt a bit queasy. And by 8:30pm I was falling asleep on the couch. I slept on the couch without my CPAP for half and hour (d’oh!) and then went to bed, where I watched a movie on my phone for an hour and a half. Finally I was able to sleep. And for once, I shut off my phone. The new Android update makes it hard to shut off all sounds, and too often a ding or a ring comes through, so I shut it off completely. Then I slept with my CPAP for over 10 hours! I can’t remember the last time I did that. 9 is a lot, but 10!? Unheard of for me.

I woke up feeling somewhat rested. But still tired. Still run down. I didn’t get out of my pajamas all day. At one point I was going to. I took off my bathrobe. Then decided changing clothes was overrated and went back to watching tv.

In the past 5 days I have crocheted a bunch of stuff, finished the book I was reading, and watched a ton of tv. I haven’t gone grocery shopping, gotten a haircut, brought in my phone to be fixed (there’s a problem with texting that really needs to be addressed), booked an AirBnb for an upcoming trip (I’ll get to that in another post), or done a bunch of other stuff that really needs to be done. I WANT to do all of that, but I just haven’t felt up to it.

And then today I woke up feeling…. normal? Normal-ish? I don’t know, but I definitely feel more like myself. I’m tempted to try going to the grocery store. I really need food. And I especially need the food I promised to make for Thanksgiving.

But I haven’t left the house other than that short walk since Wednesday. Today is Tuesday. And someone is dropping their dog off tonight for several days of dog sitting. She’s a darling and fairly easy, but I’ll need to walk her before bed and again first thing in the morning. I should probably save my energy for that. I want to go outside. I really do. The snow is pretty and the fresh air would be lovely. But on the other hand, I’m still a bit tired, so maybe getting out of pajamas and taking a shower will be enough activity for today.

My friends get a cold and they push through, continuing to care for kids and pets, going to work, running errands. I wish they would stay home so they didn’t spread their germs. I’m the opposite: I got a cold so I stayed in and kept my germs to myself, then had to deal with the autoimmune fallout and was stuck at home for another 3 days – and counting! It’s just one more of the countless frustrations that come with chronic illness.


Wanting to do so much more in a day

November 4, 2018

It’s the constant struggle, isn’t it? Even my healthy friends want to do more than they can in a day. With chronic illness, the struggle is just that much more intensified.

Some days I can’t do anything at all. One day last week all I managed was to change out of my pajamas into a clean set of pajamas around 4pm, to browse Facebook in the morning and to watch tv and movies in the afternoon. Oh, and to eat. That was it.

Other days I do lots. Today I too a walk, went to the gym briefly, answered emails, did a couple random little things at home, wasted too much time online, and did part of my monthly financial review. Not bad! It’s just that I want so badly to do more!

And I never know which days will be which energy levels.

I look at my mother and wish I could keep up with her. She does so much in a day, and I wish I could do the same. I wonder how much I will (or won’t) be able to do when I’m here age?

I see my friends, who manage to do more than me in addition to working full time and raising kids.

It’s not fair to compare. I know that. Of course I know that. But still, it’s hard not to. Because I want to do more! I want to get all of my chores done so that I can do more fun things. I want to do more of the fun things. I’m so tired of doing one fun thing and then being too tired for anything else. I’m trying to make plans with someone this week, and I feel that I can’t see them Wednesday night because I have physical therapy Wednesday afternoon and doing both would be too much. I can’t see them Friday night because I’ve got a meeting Friday afternoon and both would be too much. I want so badly to do 2 things in one day.

So mostly I’m complaining because I’m feeling frustrated today. Because it’s only 3pm and while I’ve done a lot, I want to do more, even as I’m struggling to keep my eyes open. Literally. The sun is shining for the first time all week, and we’re about to get several more days of rain. I want to be outside enjoying it! I want to go out with a friend. I want to clean up my apartment. I want so much but my body has other plans. My body wants to rest. My body isn’t able to do more.

And so I am sitting on the couch, with the laptop on my lap, looking longingly out the window and feeling sorry for myself. It’s not helpful. It’s not productive. But it’s where I’m at. And this blog is called Chronic Rants, after all, so some days I just need to rant a bit.


Taking a day off

October 27, 2018

There’s this idea that every day is a “day off” when you don’t work a full time job due to disability. And in some ways that’s true, if you define a “day off” as a day that you don’t work 8 hours at a paid job. But anyone with a disability knows that’s totally not how it works.

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Days that are not days off:

  • Days that I have one or more medical appointments. Between getting ready for the appointment, driving to and from the appointment, the appointment itself, and the research to follow up on the appointment, even the shortest appointment is never all that short. I often have to rest for anywhere from 2 hours to the rest of the day after an appointment. It’s not unusual to wake up and do nothing but get ready for the appointment until it’s time to leave the house, then get home and be too tired to do more than eat a meal (if that) and watch tv. It can kill a day.
  • Days that I have nothing scheduled and feel obliged to get shit done around the house. I used to think of this as “day off” when I worked a full time job. The difference is, back then I might spend a few hours getting shit done, then go out and do something fun with a friend at night. Now, I can do one or the other, not both. So spending the day washing dishes, doing laundry, cooking, paying bills, and handling paperwork is definitely not a day off. Bonus: I usually forget what a toll these “easy” tasks take on my body, and end up feeling like crap by the end of the day.
  • Days that I run errands. Again, this used to be a great “day off” activity because I could get stuff done, then have fun later. Now, I use up my energy with groceries and other errands, and get home feeling too tired to do anything else. Worse, if the errands involve big stores with a lot of walking and florescent lights, I often feel especially sick at the end of the day. Worst of all is clothes shopping, where I usually don’t even find what I need, but feel sick afterwards.
  • Days that I don’t do anything “productive” or fun because I feel like crap. That’s called a sick day, not a day off. And it sucks. Big time.
  • Days that I try to get things done but have too much pain, brain fog, or energy drain to get anything done. I spend the entire day trying to do stuff, then finally give up because nothing is getting done. By the time I give up, I feel even sicker than I had before, plus I feel guilty for having “wasted” a day.
  • Days I deal with medical or benefits paperwork. It’s true that I don’t work a paid job, but if I got paid for the many many many hours I spent dealing with affordable housing paperwork, SNAP paperwork, fuel assistance paperwork, health insurance paperwork, emailing with doctors, researching treatments, researching diagnoses, or any of the myriad other stuff I have to do, I would probably earn enough that I wouldn’t need those benefits. Some irony there, eh?

Do you know what is a day off though? Today. Today was a fantastic day off! Here in the Boston area, we knew a nor’easter was coming. It’s warm enough that we knew it would be rain, not snow, but it was still going to be a nasty storm. I didn’t have any plans scheduled aside from dog sitting. I figured it was the perfect day to stay home and be cozy. I ran my errands yesterday, so I wouldn’t have to do it today.

I set myself 3 goals for today: (1) Finish the novel I’ve been reading so I can finally find out who the killer is. (2) Bake the apple crisp I’ve been wanting to make – mostly so I can finally eat the apple crisp. (3) Cuddle with the dog.

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It was such a beautiful day. I did end up doing a couple of things on my to do list, but only because I had time and felt like it. There was no rush. No pressure. No guilt. You know what else I did? I cuddled on the couch with that dog above and finally finished my novel (damn, I should have guessed she was the killer!) I made the apple crisp that I’ve been wanting to make for a month (doesn’t it look yummy?) and managed to not eat too much of it. I walked the dog outside, but otherwise stayed in. I wore cozy clothes all day. I watch a little tv. I relaxed.

And you know what else? I didn’t stress out over anything! No stress, no worry, no guilt, not concern. I didn’t do the million and one things I need to be doing this week, and that’s ok! Too often, I spend every day pushing myself to “be productive” until I burn out, feel lousy, and have to spend a day resting. It’s so much more pleasurable to rest before I get to the point of feeling like crap!

I have been trying to do this more often. Mostly I fail, but every now and then, like today, I manage it, and it’s amazing.

Tomorrow I have plans to see a friend in the afternoon and to do some phone banking from home at night for the upcoming election. I’m sure that in the morning I’ll try to do some of the myriad items on my list. But thanks to the relaxing day I just had, I will feel rested and relaxed and ready to take it on. Or I’ll remember how good today felt and I’ll choose to have some more quiet time instead. Either way, it’s a win!

What are some days that aren’t really days off that I forgot to list above? Please let me know in the comments! And if you haven’t taken a day off lately, be sure to do that soon. Because we all need that sometimes.


Getting back to “normal” – whatever that is

October 15, 2018

I’ve missed you! This blog is one of many things that seemed to fall to the side as I struggled to keep up with the million and one medical appointments I had over the last month and a half. I kept wanting to write, but just couldn’t manage to pull myself together enough.

For weeks it felt like all I did was go to appointments. “What day is it? Well, I’m at occupational therapy right now so it must be Tuesday.” When you keep track of the days by thinking about what appointment you’re at, things have gone too far.

Thankfully, things began to slow down a bit 2 weeks ago. Unfortunately, right around that time I was feeling really fatigued. It made sense, given the physical and emotional stress of all of those medical appointments, right? Plus we were having unseasonably humid weather. I took more supplements. I pushed through.

It got worse.

I rested more. Watched tv. Read books. Let my chores wait and cancelled plans I had been looking forward to. I spent my time resting whenever I wasn’t at an appointment. It still got worse, and my stomach started to act up, too.

I thought about my diet. Had I eaten anything new lately? Some apples. But I made sure they were organic (a few autumns ago my stomach acted up and I learned it was the pesticides on the apples.) And I had only eaten 4 apples so far this season. I couldn’t think of anything else until a few days later when I was literally doubled over in pain, barely able to even walk from my couch to the bathroom. And then it hit me all at once: iron. I had started taking iron supplements.

The next day I stopped taking the iron* and by that night, I was doing a bit better. The next day felt even better than that. And now 4 days later, I feel back to normal! Whatever the hell that is.

I’m still tired. I’m in more pain than usual, mostly in my back, neck and shoulders. That’s from last week’s “rest” time on the couch, when I had horrible posture. I felt too bad to bother with it, and I didn’t do my physical therapy exercises either, plus my physical therapist had to cancel our appointment, and now I’m paying the price for all of that.

Still, I feel so much better than I did before, that I’m managing ok. And I only have 2 medical appointments this week! My friends would think that’s a lot, but you and I know better. After weeks of having 3-5 appointments every week this is nothing! And today’s appointment was only 12 minutes away, so there wasn’t even much driving involved. I had enough energy afterwards to go grocery shopping, then I came home and had lunch.

I am now sitting in cozy clothes, catching up on email, finally writing here, and generally feeling a bit more in control of things. It feels so good! In the back of my mind I think about how I still don’t feel up to dating, so I’m putting off signing up for a new online dating app that looks interesting, and I’m intentionally not thinking about how much I want a dog and am still not able to care for one. Ok, I think about it a little. But I try. Overall, though, I feel better physically so I’m trying to focus on the good stuff and ignore all of the things I want to do and still can’t.

Hopefully this week I can get back to having some balance in my life and in my schedule and then, well, maybe I can catch up on the many things I didn’t get to do over the last couple of weeks. After all, sick or not, some things still have to be done.

*In case you’re wondering about the iron, my doctor wants me to try taking a small dose. I was already taking 1/2 the recommended amount. We’ll see. About 5 years ago I had to have iron infusions because I couldn’t tolerate supplements. I was hoping to avoid that this time around, but no luck. I’m anemic so if the supplements don’t work, I’ll have to do the infusions again. But that’s a problem to deal with next week. For now, I’m focusing on getting back to “normal.”


But did it help?

September 25, 2018

I go to so many medical appointments, sometimes I just take for granted that I have to go. But last week, after I wrote about having 13 appointments in just one month, I also mentioned it to a friend, and she asked me something that shocked me: were they helping?

It shocked me because I hadn’t thought to ask this myself! You would think that of course I’d be evaluating each appointment to see if it was worthwhile, but at some point, I just stopped doing that. I have gotten all too used to “follow up” appointments where the doctor reviews my symptoms, nods, and then tells me to come back in 4-6 months without suggesting any changes to what I’m doing. And often this is fine, because I feel like I’m on a decent course. Or because I know the treatments come with bad side effects that I want to avoid. Still, it’s worth taking a step back every now and then to ask,

Is this working?

Is this worthwhile?

I’m glad to say that in the case of this hectic September, the answer is a resounding, YES! The hand therapy has been making a huge difference. My sleep doctor suggested one small change that has had a big positive effect. My naturopath offered me some hopefully changes. I haven’t seen any changes from my new therapist, but it’s early, and there’s nothing negative, so I’ll give it some time.

This means that what I’m doing is working and it’s worth it. At least for now.

Still, 13 appointments in one month means very little time to relax, to deal with household chores, or to have fun with friends. And it’s really getting to me. I’m looking forward to one day soon actually being able to do those things again!

In the meantime, take a step back and ask yourself, are all of those appointments helping? I hope the answer is yes but if it’s not, it might be time to ask yourself how to change that answer. (Obviously I’m not a medical professional and I’m not suggesting you stop seeing your doctors even if you’re not seeing positive results right now. Use your own good judgement!)


Too. Many. Appointments.

September 17, 2018

I laugh whenever a benefits form asks if I’ve had any medical appointments in the past 6 months. Are you kidding?!? Of course, some months are busier than others. When I only have 1-3 appointments in a month, it’s freeing! I can do more things for fun, see friends, get stuff done around the house. And then are months like this one. By the end of September I will have had 13 appointments. THIRTEEN! This is not cool.

Some of it is coincidence. I only see my naturopath every 3-4 months and I’m seeing her this month. I only see my sleep specialist twice a year, and I saw him this month. There’s also the problem that I’m currently in hand therapy twice a week for painful tendonitis. We had to skip a week and a half for scheduling reasons, but that’s still a whole lot of appointments.

On top of that, I started seeing a therapist once a week. After a bit that will change to every other week, but it hasn’t yet. The idea was that hand therapy would end in August, so September was the right time to finally try seeing a therapist. And then hand therapy got extended by another month. Oops!

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Physical therapy got put on hold due to my PT moving to a new home and a new office at the same time, followed quickly by a planned heart surgery for her husband. It was good timing for me in terms of my hand therapy and other appointments, but I’ve been feeling my scoliosis acting up, among other issues, so I have an appointment to start seeing her next week, now that she’s scheduling patients again. I haven’t seen my dentist in about a year (oops!) so that will be next week also.

These are all important. They’re also TOO MUCH!

I’m exhausted and overwhelmed. I try to make plans with friends, but can’t manage anything on a day that I have an appointment, and that means we never get to hang out. Running errands, cooking, and laundry all have to be scheduled around these appointments, too. Benefits forms aren’t getting filled out and craft projects are being abandoned. You haven’t even seen me here on this blog lately!

For now I am just trying to hold on. I only have 1 appointment in October so far. All of the doctors I see only once every X months have been scheduled for other months. I haven’t scheduled therapy or PT for next month yet, so those will happen. Still, with any luck hand therapy will have ended and I might have only 5-8 appointments next month. I can hope!

People ask, “What do you do all day since you’re not working?” Little do they know how much work it is to take care of my health! This month is worse than usual, but still, appointments, benefits forms, pills, special food prep…. it all adds up in a big way.

I’m looking forward to having some more breathing room soon. In the mean time, I hope that you all are doing better on the appointment front than I am!


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