Social Security Disability: a system that makes no sense

May 9, 2014

I’ve really missed writing! Unfortunately, I was busy dealing with a system that just makes no sense at all. That’s right folks, it’s the U.S. Social Security Disability Insurance (SSDI) system!

I had my social security hearing since I last wrote to you. For those not familiar with the process, it works like this: you apply for social security and almost definitely get denied. You appeal, and likely get denied again. You appeal again, and are assigned a hearing before a judge. This process takes more than a year. If the judge rules for you, you get your payments (in my case, not even enough to cover my rent, never mind food, gas, electricity, or medical expenses) and eligibility for Medicare, which isn’t the greatest health insurance, but it’s better than nothing (which is what you might have otherwise, depending on your situation.) If the judge rules against you, you don’t get payments, you don’t get Medicare, and your only options are to either walk away or start the whole thing over again. Ridiculous, right?

Oh, and I forgot to mention: if you don’t show up for any but the most exceptional reasons, the judge automatically rules against you. So if you get hit by a car and end up in the hospital, they’ll let you reschedule (with proof that you were in the hospital.) If you’re just in too much pain to show up, too bad, you lose. I get that they don’t want a bunch of no-shows, but when you’re dealing with ill people, reliability can be a problem. If it weren’t some of us might be, you know, working at jobs. Sure, you can schedule a hearing by phone instead, but that has to be done in advance, and my lawyer and others say it’s better to show up if possible. So if you don’t schedule a phone hearing months in advance, you better show up in person at the right time on the right day. They just give you a time and day, you don’t get to choose it, of course.

Mornings are tough for me. I never schedule anything that involves leaving the house before 11am when I can help it. It’s just too hard to get there on time, and I often feel lousy later on, too. So of course I had to leave at 8:30. Figures. And don’t forget that “not showing up” includes “not showing up on time.” So if you show up late, the judge automatically rules against you. But hey, no pressure.

So for a week I was nervous. I washed my hands more than usual. I tried to avoid being near anyone who seemed the least bit sick. What if I got sick? It’s been a year and a half since I first applied, so starting the application process over again isn’t a good option. Plus, if I didn’t show up for the hearing, my long term disability company (which requires me to apply for SSDI) could cancel my coverage. Yup, missing this hearing would make me screwed!

That wasn’t an option, so on top of the concern about the hearing itself, I had the added stress of worrying that something could happen to make me miss the hearing. And of course the hearing itself would be about me trying to “prove” that I’m really as sick as my doctors and I say I am. It was a shitty week.

But here I am, on the other side of it. I won’t know for a month or two what the judge’s ruling will be, but at least I made it through the hearing. I was nauseated beforehand, I was in extra pain that morning, and I don’t feel great about how it went, but at least it’s over. And now I wait….

5 Comments | Expectations, Fatigue, Frustration, Healthcare, Politics, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Sliding backwards

April 28, 2014

Sometimes I feel like Sisyphus. I keep trying so hard to get better, and I keep having setbacks. And yet, I know I’m one of the lucky ones.

I’m one of the lucky ones because I’ve seen improvement overall.

So I’m frustrated and grateful, scared and excited, angry and glad, whipping back and forth between different emotions as my physical health changes. I’m so glad I was able to go to a family party yesterday and still feel ok afterwards, but I’m frustrated that I don’t feel up to going out to dinner with friends tonight. I’m glad that I’ll probably feel up to going to a doctor appointment tomorrow, but frustrated that I probably won’t feel up to doing laundry afterwards. I see a bright future, but I wonder if I’ll ever reach it. It’s like the carrot being dangled in front of me. Family, friends, my naturopath… they all say that one day I’ll grab that carrot, but no one says that it will still be crunchy and delicious. Maybe by then it will have gone bad. Instead of working and socializing and living a so-called normal life, I’ll only be able to work a bit and then be too sick to socialize. Maybe I’ll never really be able to date again. Maybe my dream of being able to actually give a solid RSVP to an event is nothing but that: a dream.

Two weeks ago I was feeling pretty good. I had been seeing a lot of improvement since starting a CPAP machine. I was on a new medication. Things were looking up! I was feeling better than I had in ages and I thought it would continue. The pattern was clear: 3-4 days of feeling great, 1-2 days of feeling crappy, and another day of feeling so-so. It wasn’t perfect, but it was a great sign that things would continue to improve. And then that pattern ended. I don’t know why. Technically, nothing changed. I thought I was in transition towards a better stage of health but maybe that wasn’t it, afterall.

I am trying to focus on the positive. I feel so much better than I did two years ago. I feel better than I did even 6 months ago. And I guess that’s the difference between me and Sisyphus: so far, I haven’t had to start over in this most recent journey. I slide backwards, but not completely. That means that the next time I improve, I’m starting from a higher point. It’s not perfect, but I’m grateful for it.

So right now, as the dark clouds are rolling in and my seasonal affective disorder is kicking up, as my body aches and the fatigue is ever-present, as I wonder if I’ll ever reach that carrot of a future, I’m trying very hard to see the last few years for what they’ve been, and be glad that, at least right now, I seem to be done with them.

 

10 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Watching the Boston Marathon with a chronic illness

April 21, 2014

It’s hard to explain to people who’ve never lived here, but the Boston Marathon is a BIG DEAL. Sure, everyone knows about last year’s bombing, so they know we want to support our runners more than ever this year, but it was a really BIG DEAL before that, too.

When I was a kid, many years we’d stand along the route and cheer on the runners. I knew they were doing something BIG, but I didn’t understand how BIG it was until I got a bit older. As an adult, I cheered on the strangers and often people I knew, too. I haven’t gone every year, especially since I didn’t always live in Boston, but I’ve gone most years that I’ve been in town.

Last year I skipped the marathon because I just didn’t have the energy. I was sad to miss it, but I didn’t feel like I had a choice. It was just too much. And so I was at my parents’ house when I got a phone call from a relative who wanted to talk about the bombing that we hadn’t even heard about yet. We spent hours glued to the tv, calling and texting everyone we knew who might be at the finish line.

But this year is different. I’m by no means “healthy,” or even back to where I was just a few years ago. Still, I think I could manage to watch for just a little bit. The thing is, I can’t be sure, and so I didn’t make plans with friends to go watch it, and going alone is boring, but I might do it anyway. There are new security restrictions because of last year, so I’m thinking about how I could avoid bringing a backpack. My meds fit in my purse, I can carry water bottles in a plastic bag, maybe I can bring lunch in disposable containers…. I’m planning and plotting, trying to figure out how it could work. I need to protect myself from the sun, stay warm, drink lots of water, and eat a healthy lunch. And I need to make sure I don’t expend too much energy in getting to and from the spot I’ll watch from (whereever that may be.)

So this year, like so many others in the past, I’m hoping to watch at least a bit of the Boston Marathon. I just hope I can do it without wearing myself down too much.

1 Comment | Decisions, Fatigue, Frustration, Limitations, Symptoms, Unpredictable | Permalink
Posted by chronicrants

So much for “gluten-free”

April 13, 2014

Back in February 2012 I thought I was going to stop eating gluten. As it turns out, what I did was stop intentionally eating gluten. I was still consuming it, though.

In my first year being gluten-free I avoided the obvious sources, like breads and pastas made with wheat flour. I also went online to figure out some of the less obvious sources of gluten to avoid, like soy sauce, lipstick, chocolate, salad dressing, and chicken broth. I found gluten-free versions of all of these, and I thought I was doing pretty well.

Then in the second year, I was horrified to realize how many other sources I hadn’t considered, like sunscreen, hand lotion, cough syrup, lemon juice, cooking spray, vitamins, and dish detergent. Oops!

Now I’m at the start of my third year, and I’m still learning. There are so many areas to consider. Yesterday I reviewed relatives’ recipes they were using for a big family dinner. Hours later it occurred to me: I hadn’t asked about cooking spray. And it’s a good thing I asked, because one person was going to use a type that I couldn’t have. She’s kindly using butter instead.

There are a lot of sources online that list areas to watch out for, but some are incomplete and it’s hard to remember them all. I have a list of food allergies in a Google Drive document so that I can share it with friends when they want to cook for me. I think I’ll make a list of hidden gluten sources on there, too. That way, I won’t have to worry about forgetting to mention something – I can just look at the list!

Where have you found gluten that you hadn’t expected? How have you kept track of all the places it hides?

3 Comments | Educating, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Rants, Unpredictable | Permalink
Posted by chronicrants

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