I Think I Need One of These

The wheelchair guy was here yesterday. This is a new wheelchair guy, one who belongs to the new insurance network, but he seems OK. We're working with a new PT, too, because the old one (with whom I'd worked for many years and who I liked a lot) didn't belong to the new network, but the new one seems OK, as long as I don't actually have to go in for an appointment, because the bathrooms in that building are really not very accessible even though it's a rehab medicine facility, for cryin' out loud! What were they thinking?

Where was I?

Nothing exciting in the works, chair-wise. A new seat cushion, because the one I have is getting distinctly butt-shaped. Taking a switch I can no longer work by hand no matter where I put it and moving it to my head array someplace, although we haven't figured out where, yet, exactly. And upgrading the electronics so the chair steers and tracks better, although the previous wheelchair guy said they couldn't do that in a chair this old, but this guy says they can. I guess we'll see about that.

Like anything having to do with medical equipment, it won't be cheap, which has me wondering how much I want to spend to upgrade a five-year-old chair. But whatever.

After a long blogging sabbatical, there are several things I want to catch up on, and I can't decide where to go first. Nothing that won't keep 'til another day, I suppose. Nice, not having a deadline!

Medicare for Dummies

OK, I need to buckle down and do this. After two years of scrambling to patch together some kind of health care coverage that we can more-or-less afford, in December I finally become eligible for Medicare. Apparently there are decisions to be made. I'm a little apprehensive about this.

Fortunately, the Centers for Medicare & Medicaid Services provide a little (147-page) booklet:

Medicare and You 

This is the official US government Medicare handbook

Yes! Documentation! A user manual! As one of the infinitesimally small number of people on this planet who actually read these things, I find this very reassuring. It's filled with pictures of such happy people. If they've done this Medicare thing and they're still so cheerful, how bad can it be? Aside from the gray hair, most of them don't even look all that old. In fact, they look about my age. What's up with that? The print is comfortably large, I guess so they don't have to produce a separate large print version – accessibility and all that. Well, maybe not. On the back cover, it says it's "also available in Spanish, Braille, Audio CD, and Large Print (English and Spanish)." I wonder how large the print is in the large print version?

So I start reading. They put the index in the front, which seems odd. I don't know if I like the idea or not. On page 58, I find:

Things to Consider When Choosing Your Medicare Coverage

Excellent. This sounds like exactly what I'm looking for. They followed this with a bunch of questions:

Are the services you need covered?
Are you eligible for other types of health or prescription drug coverage?
How much are your premiums, deductibles, copayments, coinsurance, and other costs?
How much do you pay for services like hospital stays or doctor visits?
Is there a yearly limit on what you pay out-of-pocket?
Do your doctors and other health care providers accept the coverage?
Are the doctors you want to see accepting new patients?
Do you have to choose your hospital and health care providers from a network?
Do you need to get referrals?
Do you need to join a Medicare drug plan? 
Do you already have creditable prescription drug coverage?
Will you pay a penalty if you join a drug plan later?
What will your prescription drugs cost under each plan?
Are your drugs covered under the plan’s formulary?
Are there any coverage rules that apply to your prescriptions?
Where are the doctors’ offices?
What are their hours?
Which pharmacies can you use?
Can you get your prescriptions by mail?
Do the doctors use electronic health records or prescribe electronically?
Will the plan cover you in another state or outside the U.S.?
Are you satisfied with your medical care?

Seriously.

The Socratic method is just not working for me here. How the f#@k should I know? Isn't that what I'm trying to find out? If this is an FAQ, I've got the Qs. What I need are the As. And the $$. I need to know about the $.

Aside from the gray hair, I do not resemble the smiling, happy people in this booklet. Maybe I shouldn't have started in on it when I was already cranky about MetLife terminating my group life insurance because they aren't sure I'm still disabled. I wasn't really feeling open-minded and positive and cheerful.

Seriously.

If I put off dealing with this until I'm feeling open-minded and positive and cheerful, it'll never happen. That's just a fact. Aside from the gray hair, I never look anything like the smiling, happy people in this booklet. Maybe I'm going to need to grit my teeth and slog through this stuff anyway.

Maybe tomorrow. Maybe I'll do it tomorrow.

Seriously.

Stray Parsley

I'm not usually one to badmouth written instructions. I spent most of my working life writing technical documentation, and apologizing for it. I know how hard it is to explain something in a way that will provide all the information anyone would need, and be totally clear to everyone who might read it.

Maybe the problem is that I expected this to be confusing, so I'm making it harder than it really needs to be.

Or maybe I just assume that anything having to do with the healthcare delivery system is going to be a pain in the butt. You start with healthcare, then throw in insurance and the government, and it's got to be bad. Wouldn't you think?

Maybe I just don't want to be doing this. Well, that part's true, for sure.

But I've got to tell you, trying to figure out what I need to do about my upcoming eligibility for Medicare, and how it may or may not coordinate with the insurance I'm buying through Scarecrow's employer, is giving me a new perspective on what it must be like to live with a learning disability. I can still read the words. I can still understand each of them individually. At least I think I can. I'm just having trouble extracting information that might be encrypted in those words, arranged in that order. I read them slowly. I read them multiple times. It's like reading a webpage that Google has translated. Each of the words is right, but they're just… not… coming… together.

I was recently reading a page that was originally written in Russian. I don't know any Russian, so I don't know how good or bad the translation might have been, but I thought I was kind of getting the gist. Then I came across this:

"But as in all of Russia, the big crisis came to Bobruisk, in connection with the attitude of the Jewish population to the Russian school in the 70's. This crisis was, as is known, connected with the executing of the law of general military service in Russia (1874), which gave great privileges to people with Russian education and origin--shorter military service. It was a stray parsley! Even in extremely religious circles the "fence-breakers" multiplied."

It was a stray parsley!

Enablers Needed

The wheelchair guy has figured out what bits I need to install a head array control on my power chair, and my insurance company has graciously granted the regal okey-dokey. My coinsurance is 20%, and they'll let me pay half now, and half at installation. So we're good, right?

So, yeah. There's that 20%, and 20% of the lift, and 20% of the lung vac... But here's the thing. 20% of a big number can still be a pretty big number. Especially if there are dollar signs attached.

And what is it going to get me? For now, I would be able to drive my monster robo-chair more-or-less safely, and adjust the seat without help. I would be able to get out of the house, without leaving a trail of devastation and chaos in my wake. At least, not all the time. That would be cool. But for how long? We would be throwing a significant chunk of change at a solution for a progressive disease. Another run with the Red Queen. If I knew I would be able to use it for a year, say, it would be easier to commit. For six months? Maybe. For only a month or two of enhanced mobility, it probably wouldn't be worth it. And, of course, there's no way to know.

it's not like I can't think of other things to do with that money besides pouring it down the MS rathole. Assuming that MS always has first priority when allocating family resources just seems wrong to me.

But it would be cool to walk through the park across the street with Scarecrow and the dogs. It would be very cool.

Adventures on eBay

If they put s#!t in a can, I swear, my mom would buy it. Every time I venture onto eBay, I realize she's not the only one.

In our ongoing effort to bring the volume of our belongings into closer  correspondence with the available space in our house, I came across a couple of things I will never again use in a million years but which seemed too valuable to throw away. I decided to put them on eBay. Who knows? There are people like my mom out there.

I've been giving desk-drawer space to a K&E Leroy lettering set ever since my brief and unremarkable career as a zoologist, many many many years ago. It was quite the indispensable tool in its day, for preparing technical charts and graphs. It's now totally obsolete, archaic, even, superseded by garden-variety software installed on pretty much any computer. And it wasn't really something you'd want to keep around to do for fun. Really. Trust me on this. So I put it on eBay. Not only was it not the only item of its kind offered for sale, far from it, but somebody actually bought it. Go figure.

Encouraged by my success, I put up my Olympus OM1 SLR 35mm film camera (remember film?) with f1.8 50mm and f5 85-250 zoom lenses, and a bunch of accessories. It was a fun camera in its day, but I can't remember when I last took it out of the case. And really, film? I invested a fair bit of time in creating a listing that would stand out from the surprising (to me) amount of other old Olympus OM Series hardware. With so many people selling this stuff, I can only assume that there are people buying it. Who knew?

There really are people like my mom out there.

In other developments, Ernie's pain meds seem to be helping, thanks for asking. He is moving a little easier and seems to be resting better.

The ARNP in my family practitioner's office filled out the latest Attending  Physician Statement for the long-term disability insurance company, declaring that as much as I wish it were otherwise I am, in fact, still disabled. Since we will apparently need to do this every 6 to 9 months for the next 10 years, she cleverly saved a copy so it will be a quick and dirty process next time.

The wheelchair guy says a joystick of some sort is really the best option for controlling my power chair. I'm sure he knows what he's talking about, but I'm also sure any joystick-type solution is only going to buy us another couple of months before the Red Queen catches up to us again. And since another joystick modification is not that much less expensive than going with a head control, how about if we just cut to the chase? So, he's going to put together a head control for me to try. We'll see how that goes.

So. It's Friday. And it's a beautiful day. (Guess who was re-watching Fargo the other night.) They say the sun may make a few brief appearances this weekend. For March, in Seattle, that will be a beautiful weekend.

Blogging While Bummed

I try not to wallow in self-pity, but I admit that yesterday afternoon I put my feet in and swished them around a little. I usually don't post to my blog when I'm feeling picked on because, frankly, I usually don't much want to. I didn't really much want to write anything yesterday, either, so I don't know why I did.

It wasn't even self-pity, really; I just felt sad. I knew we wouldn't have Ernie around for much longer, but I felt sad to have it confirmed. I don't have much mobility left in my hands and arms, but I felt sad to acknowledge that I'm losing what little I have. I had been looking forward to seeing some of our greyhound friends last Sunday, and felt sad that I wasn't able to do that.

I've never been a particularly social person. I worked from home for years without ever really missing the interaction with coworkers in the office. Scarecrow has always been the party animal in our family, not me. Even so, I'm feeling a little desperate to get out of the house. As much as I love Scarecrow and Tuffy, when I see anyone else I pounce on them and desperately try to talk them to death. I almost feel like I've forgotten how to have a normal conversation with normal people. I realize this is largely my own darn fault. The prospect of dealing with durable medical equipment providers is offputting, so I kept putting it off. But it's time. I've got a call into the wheelchair guy, and we'll see what he comes up with.

In other news, my Long Term Disability insurance provider needs another statement from my doctor confirming that I'm still disabled. They say the most recent appointment they have information about was last August. I've explained that I last saw the doctor in August, I have no appointments scheduled, and no particular reason to go. My condition hasn't changed (other than to continue to progress). They say my failure to return an Attending Physician Statement by March 30 will "result in closure of this claim." I'm just guessing, here, but if I called today to get a non-emergency appointment with my neurologist, I could probably see her sometime in July. If I was lucky.

We went through this whole thing in October. Are we going to do it every couple of months for the next 10 years?

It never fails. Nothing snaps me out of a blue funk like getting really pissed off!

I just saw a bald eagle fly past my window. Geez, they're big birds!

I'm Sure This Makes Sense to Somebody

My long-term disability insurance policy requires me to apply for SSDI, and reduces my monthly benefit by the amount I get from Social Security. OK fine, I get that. I applied for Social Security disability, I had my approval letter before my long-term disability kicked in, and they started paying benefits in December. The company that carries my disability policy ought to be pretty happy about that, because it's that much less they have to pay each month. Maybe they are. Hard to tell, with insurance companies.

Anyway, in the course of getting all this coordinated, the insurance company paid more than they owed me, and I have to pay it back. OK fine, I get that. But can they straighten this out by withholding what I owe them from my next benefit check?

Noooooo...

I have to send them a check for the amount of the overpayment. "Future benefits will be withheld until [my] full reimbursement is received."

"A pre-addressed envelope is provided for [my] convenience."

So thoughtful.

A Welcome Anticlimax

I was all set for an argument. For three months I've been more-or-less happily paying $266 for COBRA continuation insurance coverage, with the ARRA subsidy covering 65% of the cost. Then, browsing around the website for the company that administers the coverage, I see that next month my premium is going up to almost $800. Obviously a mistake -- in December legislation extended the ARRA subsidy to 15 months, and I'm only three months in -- but getting these mistakes straightened out is never easy. Are you kidding? Near as I can tell, this is a company that handles red tape for insurance companies! So I went into this loaded for bear. You know how you get? You've been over and over the argument in your head at three in the morning, getting wittier each time. (Am I really the only one who does this?) I was ready.

It doesn't help that the recent legislation has generated a lot of calls, so I get to wait on hold. Not all that long, truth be told, but still. A cheerful representative, who sounds like she can't possibly be old enough to solve my problem, finally answers. I give her the scoop, and brace myself for the inevitable hassle.

No problem, she explains cheerfully. It's not a mistake. The website doesn't show the subsidized premium, but your invoice will be correct. Then she asks if there's anything else she could help me with today.

No, I say. That will do it. Thanks.

Virtual Friday

It's funny that I still think of weekends as weekends. Even though I go in to work every day with Scarecrow, it's not like I do any. Still, Scarecrow doesn't have to work tomorrow, so today's a virtual Friday. I still like them.

The chore for today was signing up to continue health insurance coverage for Rowan and me under COBRA. With the 60% American Recovery and Reinvestment Act subsidy it's still going to cost more than I paid as an employee, but not nearly as much as I had feared. Of course, the subsidy only lasts nine months, but you can just call me Scarlett -- I'll think about that tomorrow.

The chore for tomorrow is to renew my Disabled Parking permit. The task itself is no big deal; Scarecrow will just stop in at the doctor's office for a signature. It's just odd to think that it's been five years since I got the darn thing. When I got it I could still walk, a little, using Scarecrow's arm for support. I could still drive, getting my manual wheelchair in and out of the car myself. I still had a day job, and went in to work every day. I brought home a paycheck that I'd earned with my own little hands. I could still play music. Recreationally. At least, it was recreation for me. My family would probably have called annoying noise -- it was a banjo, after all -- but they were kind enough to put up with it. (I might also mention that I have accumulated a serious pile of annoyance credits. Scarecrow plays accordion.)

It's realizations like this that sneak up and smack you upside the head, sometimes. You're going along, doing an everyday chore, minding your own business, and whap.

I need to stop and think about that for awhile.

Taily Ends

I spent the last few days dealing with what I hope will be the taily ends of several ongoing projects.

The nice lady from the insurance company called on Friday to tell me that my claim for long-term disability was approved. I'm so relieved. I need to remember to fax them my SSDI approval letter.

I finally signed up for a Skype phone number. I used to have a VoIP soft phone for work, which let me use my headset to call regular landline or mobile phones from my computer. Since I don't have my work phone anymore, and can't pick up a regular telephone handset or cell phone, I was pretty much incommunicado, phone-wise. It was nice while it lasted. Skype and Dragon Naturally Speaking don't play all that well together, but for the price I'm willing to put up with a little inconvenience.

We finally got the van in for service on Monday. For the first time since we bought it. Two and a half years ago. Considering we need this van to run pretty much forever, this is not the way to make that happen. It took us a while to figure out the logistics. The mechanic we've taken our cars to in the past is very good and relatively cheap, but very slow. We'd just drop the car off and let them keep it until they got done with it. Can't do it that way anymore. Most cars can't manage my power chair. Without that van, I'm stuck wherever I'm at. Fortunately, this time, it was a pretty quick service job. The van is still on warranty, so they're not motivated to find a lot wrong with it. They did the work while we waited. As car dealership waiting rooms go, it wasn't bad.

Yesterday we met with our contractor. Our construction permit, which was good for a year (!), expires before Thanksgiving, so we are motivated to get this project wrapped up. Also, we're running out of money. The good news is it looks like we'll be able to reuse the built-in bookshelves and desk we ripped out of the old office. It's much nicer than what we could afford to replace it, in addition to which I really hate throwing away perfectly good stuff. The material from the fence we had to rip out should be reusable as well. Not that the escape artist whippet pays much attention to the fence anyway.

This Is Not a Rant

I'm not going to rant today. Well, maybe I am. A little bit.

I finally opened the envelope from the long-term disability company. It did indeed have a many-page form asking me to explain why I think I'm disabled, and why I don't think I'll be getting better anytime soon. It's like déjà vu all over again. Didn't I already submit all this information for the short-term disability claim? It's the same company, fer Pete's sake. Don't these people have a photocopier?

They say my neurologist didn't fill out the form they faxed to her, either, and they want me to bug her about it. Hello? It's exactly the same form she filled out, for the same company, about the same person with the same condition, a month ago. No wonder physicians feel like they're inundated with paperwork.

But I'm not going to rant. It's Friday. If it's a gloomy, wet weekend, which it looks like it will be, Scarecrow can build a fire, we'll have a single malt scotch, and listen to The Swing Years And Beyond on NPR. If you had told me, when I was 18, that I would consider this a hot Saturday night date, I'd have asked to be euthanized on the spot. Now it sounds kind of nice.

A Magic Number

Today I finally got around to going to the Social Security web site and using the magic number they sent me at the end of last month to create a new magic number which I will use for access to the web site. Really. They set me an eight digit number, which I used to create a seven digit password. One that will be easy for me to remember, but not my Social Security number, or my address, or my phone number, or the address or phone number of anybody I know, or my birthday, or the birthday of anyone in my family, or anything stupid like 1234567 or 3333333, or any of the 8 million numbers I've had to memorize in a functional member of American society. And don't write it down on a Post-it note and stick it to your monitor!

It was the highlight of my day. Hey, it's a Wednesday. The bar isn't set   very high.

I have an envelope at home from the long-term disability company. I talked to the LTD lady on the phone a couple of weeks ago, and she warned me it was coming. It's another many-page form explaining why I think I'm disabled, and why I don't think I'll be getting better anytime soon. I haven't opened it. I'm having trouble getting excited about going through all this one more time.

OK, she says (pulling up socks). One more time...

Another Letter From Social Security

Yesterday afternoon as Scarecrow was going through the mail, between the T-Mobile bill and a Netflix DVD, he mumbled something about "... disability claim approved, blah blah blah..." I assumed he was talking about my claim for short-term disability insurance, since they seem to need reassurance on a weekly basis that I'm still disabled. But no. This is from the Social Security Administration. They approved my claim for disability benefits.

The letter I got a couple of days ago about creating a password for the Social Security web site makes sense now. Unbeknownst to me, the letter  approving my claim, which I didn't expect for several more months, was already in the mail. OK. I get that part.

But wait. Could they really be talking about the claim I filed three weeks ago? Don't expect to hear for several months, they said. Your initial claim is likely to be denied, they said. I know people who have spent years in SSDI hell, trying to get legitimate claims approved. This can't possibly be right. WTF?

If it's true, I guess I'm relieved. If it's true, the long drawn out hassle for which I was braced has become the anticlimax of the millennium. But I find myself waiting for the other shoe to drop. It's never this easy. Is it?

Must Be Monday

On Saturday morning I realized that Friday was the deadline for my doctors to assure the disability insurance company that I am, in fact, still disabled. If the insurance company doesn't hear otherwise, they say they'll assume I'm going back to work. That would be great, but it ain't happenin'. Of course, I realize this on Saturday morning and can't do anything about it until Monday, so it bugs me all weekend. I really hate it when I do that to myself.

So this morning I call the insurance company and try to make sure they're not going to terminate my short-term disability claim because they haven't heard anything back from my doctors. Exactly what I want to do first thing Monday morning.

Ernie's stitches ripped out again, Tuffy's sick, Scarecrow's on a tear, library books are overdue.

I think I'll take a nap.

Howling Before I Was Hurt

Honesty compels me to confess that my earlier rant about the cost of COBRA coverage was based on inaccurate information. The HR lady at work initially told me that the cost of continuing my health insurance coverage under COBRA would be $1200 per month. This was wrong for two reasons

• I thought it was an all-or-nothing thing -- you could either continue your current coverage, or opt out.

Not so. Leaving my day job of 14 years constitutes a 'qualifying event', so I can choose from any of the options available at the beginning of the plan year. I don't, for example, have to cover Tuffy, who can get better coverage for less money through UW, where she is a student. Too bad I didn't know that last year.

• The $1200 estimate assumed I would be covering the whole family for medical/dental/vision, which I wasn't doing anyway.

Scarecrow gets pretty decent medical coverage through his employer. He can't cover Tuffy or me, but most companies that size don't offer benefits at all. You take what you can get, and be glad you've got it.

If the HR lady had initially told me that COBRA coverage would be, say, $600/month, I would have gasped and complained and wondered how the heck I was supposed to pay for it on my newly-reduced income. But having softened me up with an estimate of $1200, something on the order of half that almost sounds like a pretty good deal.

It's all relative.

I've Never Liked Snakes

I wonder if this whole health insurance thing would be less of a trial if they called it something warm and fuzzy, like "flying squirrel", or "sugar glider." Or "hippopotamus." Or maybe "basking shark." COBRA is just so off-putting. You know, I've really never liked snakes.

My previous employer offered pretty good medical coverage, for a small company. Our employee contribution toward the premium had crept up over the last several years, as had the deductible, and the stop-loss limit, but no worse than anywhere else, probably.

Now that I've joined the ranks of the disabled and unemployed, continuing this coverage would cost me $1200/month. My disability benefit is 60% of what I used to make (100% taxable), and if I were to pay $1200/month for insurance, there would not be a great deal left. If I were laid off I would be eligible for a subsidy, but no luck if you're disabled.

Lucky for me, Washington state has a high-risk insurance pool for people who can't get coverage elsewise. The premium for the basic plan for people my age is -- get this -- around $1200/month. For about half that, they offer a high-deductible plan that doesn't cover much, but would keep me out of debtor's prison if I get hit by a truck.

It's not like I don't have choices. I have choices. I just don't like any of them.