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

My body and your religious beliefs

June 30, 2014

A few years ago the Supreme Court of the United States (SCOTUS) ruled that corporations are people. Yeah, no kidding. Today, it ruled that those “people” can deny birth control coverage to their employees. Yeah, again, no kidding.

If you’re not familiar with these, you can read about corporations being ruled “people” here, and you can read about today’s horrible decision on birth control coverage here. Go ahead, I’ll wait.

Welcome back. In case you didn’t read all of it, the basic idea is that health insurance in the U.S. is usually provided by companies for their employees. Yeah, that’s messed up, but it’s a discussion for another day. The federal government mandated that this health insurance coverage has to include preventative care, including things like cancer screenings and birth control. Birth control is incredibly controversial here in the U.S. (Maybe I’ll talk about my opinions of misogynistic policy-makers, pundits, and loudmouths another day.) A couple of family-owned companies sued, saying that birth control pills, IUDs, etc. could be assisting abortion (even though medical science says otherwise) and that therefore they are against the owners’ religious beliefs. They therefore believe they should not have to provide coverage that includes birth control pills, IUDs, etc. They argue that since it’s about their freedom of religion, they shouldn’t have to pay the penalties, either. And the court bought it. Or, at least, 5 male justices bought it.

The decision was written so that it was clearly meant to be narrow; it should apply only to these particular businesses and only to birth control. But we all know that the door is now open to any other business that wants to sue. And if the court rules that birth control is an “acceptable” religious objection but that pork-based pills or transfusions or whatever else isn’t an “acceptable” religious objection, then they’ll be showing preference for one religion over another. They can’t have that. So where would the line be drawn for healthcare coverage denials?

I have been railing against this ruling on Facebook all day. I am pissed off like you wouldn’t believe. In order to keep my cortisol levels from skyrocketing, I won’t get into this here today. I just want you all to be aware of this ruling. And to say that I believe this, above all else, to be true about the state of healthcare today for those who are not wealthy enough to afford care without insurance coverage:

Who should make decisions about my healthcare:

  • Me
  • My doctors/healthcare providers

Who actually makes decisions about my healthcare:

  • Me
  • My doctors/healthcare providers
  • My health insurance company
  • My disability insurance company (by denying a claim, they take away my health insurance)
  • My government
  • My employer
  • Pharmacies (for example, Walgreens now insists on calling doctors to personally verify prescriptions for opioids)

See the problem?

What do you think about this ruling? How does it make you feel? And who else makes decisions about our healthcare? Who did I forget? Please share in the comments!

17 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Medication, Politics, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

What about the infectious diseases?

June 18, 2014

It started with a Twitter chat about different thyroid meds. Then we were emailing about hypothyroid. It morphed into conversations about our families, our hometowns, and the other stuff of life, but it always came back to health stuff. And then the other day Miss Diagnoses emailed me a transcript of an interesting talk about tick-borne illnesses and how their symptoms often masquerade as autoimmune diseases. Hmm. There’s something familiar about that!

I read the 21 page transcript, then I visited the doctor’s web site. I ordered his book from my library system and will pick it up next week when it arrives at my local branch. I considered trying to visit this doctor, without insurance, 5 hours away. And then I checked myself. How many times have I traveled down a similar path?

There are so many things that could be the cause of my health problems. There are so many things that could be contributing factors. It’s hard to know which to pursue. But every time I see a potential answer to the big question, I grab hold of it like a life jacket in the middle of the ocean. Then I remember that there’s a boat nearby. I’m just not sure if I can manage to swim to it, or if it might have a hole in the bottom. Because if I see the wrong infectious disease specialist, I might be told I don’t have any infectious diseases even though I do. Or I might be told I need treatment that I don’t need. Or I might be given antibiotics for 1 month when I really need them for 1 year.

There was a time when I believed, as so many people still do believe, that if you get sick, you see a doctor, they find the problem, they treat you, and you get better. But I know better now. I have literally dozens of stories to disprove that neat little theory. Take last fall. I saw a sleep doctor who said there was nothing he could do to help me. He gave me a referral to a sleep psychologist. Great. Then I saw someone else in his practice (the doctor I’d originally been trying to see anyway!) He ordered tests that the first doctor didn’t even suggest. He suggested a medication change that the first doctor ignored. I ended up with a sleep apnea diagnosis that the first doctor never considered. And he prescribed a CPAP machine that I was clearly never going to get from the first doctor. The CPAP has made a huge difference for me. I sleep so much better, and I feel more clear-headed. Some nights I haven’t used it all night for one reason or another (an ear infection, congestion, a weird dream that caused me to take it off in my sleep) and there’s a noticeable difference the next day not only in my fatigue and energy levels, but also in the clarity of my thinking. More than that, if untreated, sleep apnea can be dangerous. One doctor diagnosed it. Another never considered it. And that was in the same practice.

I can give similar stories in the fields of endocrinology, rheumatology, internal medicine, physical therapy, psychology, dentistry, orthopedics, and probably others that I’m not thinking of right now. So why should infectious disease or any other specialty be any different?

And yet I know that I need to pursue this. And visiting an supposed-expert 5 hours away for many hundreds of dollars just isn’t the most realistic approach. I need to find someone local, and I really won’t know if they’re any good until I try them. And even then, I don’t know enough about the field to be sure. But I’ll try, because what other option is there? Can I really risk leaving this stone unturned?

I started a list tonight of new paths to pursue, new potential pieces of my health puzzle. Maybe this isn’t one of them. But there’s no way to know until I try.

If you know of a great infectious disease specialist in Boston, please let me know in the comments or email me at msrants at gmail dot com ! And I’d love to know about your experiences with infectious disease diagnoses and research.

7 Comments | Educating, Expectations, Frustration, Healthcare, Pain, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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

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