Time Passing

I published the first post on this blog two years ago today. Having recently retired from my day job, my intent was to document the process of applying for SSDI, which I expected to be a long drawn out and frustrating experience. Six weeks later my claim was approved, and I was officially out of stuff to write about. Not having anything to write about does not appear to have held me up much.

I started out posting every day. That lasted about a week. Then it was every other day. Then a couple of times a week. For the last couple of months, posting once a week or thereabouts seems to be a comfortable compromise between feeling obligated to write something, and not having anything to say.

As if to mark the anniversary of the blog by reminding me of its initial purpose, I got an envelope from the Social Security Administration the other day full of stuff about applying for Medicare. I haven't been able to work myself up to look at it yet. It's sitting on the corner of my desk, looking ominous and threatening. I tell myself that applying for SSDI was a lot easier than I expected it to be. Maybe signing up for Medicare won't be that bad. Maybe.

Several times over the last couple of years, we thought my dad was dying. Each time, he defied the odds and confounded the authorities, stubbornly refusing to relinquish the place on the planet he has occupied for almost 91 years. He wasn't ready to go. Now, I think he is.

Spending so much time lately climbing out on limbs of the family shrub, I find myself thinking about all this birthing and dying stuff. I mean, duh? Although I may well think about it differently when I'm confronted with my own imminent demise, at least from this vantage point, dying doesn't seem all that scary. Pain, now, pain is scary. But if you can die without pain, you know, you've got to go sometime. I don't remember being afraid wherever I was before I was born, why should being dead be any worse? Dying is just part of the deal. It's inevitable, and while I guess it's always a little painful for the people you leave behind (at least you'd hope somebody is sorry to see you go), it's not always bad.

Stalking dead people in the parish register of Sainte Genevieve de Pierrefonds from 1782, so many of the burials are for babies only a few days, or months, or years old. Early census records note the number of children each woman bore, and the number currently living. The two numbers were rarely the same. And the record of a baby's baptism sometimes preceded that of the burial of a young mother. That's a different kind of death altogether. Those deaths are tragic. Although I don't know those people, reading about what happened to them makes me sad. And then there's what looks like a hastily-scribbled note stuck in the pages of the register that records nine names, "tué par les Iroquois." That doesn't sound exactly like a peaceful sendoff to me.

For my dad, dying is a process. He's getting ready to go, but in his own time, on his own terms. At home, with family and friends around him. He's not eating or drinking much. He refuses pain meds. He seems to be aware, at some level, of what's going on around him, but doesn't respond much (other than to spit out the pain meds). He likes sitting in the sun in the afternoons. Last weekend, his grandson's new bride brought her viola and played for him. He liked that. He is dying. We will miss him, but this death is not a bad thing.

My dad always said he wanted to live to be 100, and be killed by a jealous husband. I don't think he's going to make it to 100, but who knows? I guess it's still possible that a jealous husband will show up and send him on his way. He would like that, although I'm not sure my mom would be so crazy about it.

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.

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.

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...

Why Am I Doing This?

After I set up this blog, it took me three years to come up with something I thought would be worth writing about.

I didn't want to collect educational information about MS. It's been done very well, by people who put a lot more effort and energy into it than I ever would.

I didn't want to scare people. Most people with MS are relapsing-remitting. They have to deal with a whole mess of scary stuff, but between relapses don't have significant residual disability. Three years ago I was already secondary progressive, with a somewhat different set of issues. Not everyone with MS will wind up where I am.

I don't have any enlightening insights into life with MS, or a particularly literate way of putting my experience into words, even if I were convinced it was worth putting into words, which I'm not.

Besides, after 20-some years of writing to pay the bills, I'm dogged by the Samuel Johnson quote, "No man but a blockhead ever wrote, except for money." Writing is work, kids, not something one does for fun. I gotta have a reason.

So, OK. I finally retire from my day job. I'm about to do whatever it takes to make the transition from being employed to being retired on disability. From everything I've read, applying for Social Security Disability benefits can be quite the adventure, and approval usually takes a long time. Friends who work for Social Security might be able to explain what's going on. If nothing else, documenting the process will help me keep track of what I did, and when I did it. Maybe by the time my claim is approved, I'll find a different reason to keep doing this.

So I apply for SSDI. Three weeks later, Social Security has approved my claim for benefits. Now, tell me again, why am I doing this? All the reasons I had for not blogging are still valid, and the reason to blog is gone.

Wait...that might be a good enough reason to keep writing, right there. Sheer perversity has always been a powerful motivator for me, and has probably been the force behind most of the pivotal decisions in my life.

Apparently, it still works.

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?

A Letter From Social Security

The mail yesterday brought a perplexing communication from the Social Security Administration. It has a magic number they tell me I can use to set up a password on the Social Security Administration web site. They tell me not to actually do this until I get the letter approving my benefits, or until I get my first benefit payment. OK fine. Since that's probably still three, or four, or six months away, if they decide to approve my application, I'll set it aside and try not to lose it.

Here's the perplexing part. The magic number is only good until the end of October. Since I applied for benefits September 10, that's less than eight weeks after I submitted my application. What the heck good is a magic number that's only good for eight weeks?

So, whatever. In the unlikely event that they make up their minds in the next month, I'm all set.

Eight Pages of Details

I got a form in the mail from Social Security yesterday, asking for eight pages of details about my condition, and what I can and can't do. Scarecrow also got a form asking for eight pages of details about my condition, and what I can and can't do. He is supposed to fill his form out based on his own observations -- he's not supposed to ask me what I can and can't do.

Eight pages. I guess I'll stop worrying about whether or not I should have put more detail in my initial application.

Since they sent the forms at the same time to the same address, I wonder if it would cause any consternation if they came back filled out in the same handwriting? Paper forms are kind of a deal for me, because I can't do the whole pencil and paper thing anymore. I thought about asking Scarecrow to scan the form so I could use a graphics editing program put the answers in, and then print it out -- but that  seemed like a lot of bother. I finally just put all my responses in a text file. I'll print it out, stick it on the back of the form, and Scarecrow can write 'see yada yada' wherever appropriate.

Focusing on what I can and can't do is massively depressing, and the process of applying for Social Security disability benefits entails a lot of it. But hey, it's the weekend.

Applying for SSDI

Yesterday I filed my application for Social Security disability benefits.

We had an appointment for 2:00 PM and, having put it off until the last possible minute, I spent the morning frantically filling out the Adult Disability and Work History Report online. I had already gathered the information I thought I'd need, and figured that entering it into the online form would go pretty quickly. For the most part, that was true.

The bits that hung me up with the parts where they want to know about my condition, and how that limits my ability to work. They allow 500 characters for each response. That makes me nuts. I know I have a tendency to run off at the pencil (you've noticed, you say?), but I can be concise when the occasion warrants. I was a tech writer for, I don't know, a really long time. It was my job to be clear, and get right to the point.

Begin digression: Long ago I had a job writing the text for museum exhibits -- you know, the stuff on those little cards and panels that nobody (except me) ever reads? For one exhibit, I had to describe the Civil War in 120 words. Now, it happens that I'm really interested in that period of history, and I've read a fair amount about it. That only made it worse.  120 words. I agonized over that text. By the time my boss finally threatened to rip it out of my hands, I had come up with 120 words that I thought did a pretty good job of conveying the essence of this conflict. (I'm sorry, I don't remember what I came up with, but I'm sure it was a masterpiece.) As I waited for my boss to be awed and humbled by my masterful use of the language under such stringent limitations, she told me they'd redesigned this section of the exhibit. There would only be room for 60 words. The lesson I took from this, boys and girls, is that you can always make it shorter. End digression.

Where was I?

So, OK, I describe my condition and its impact on my ability to work in 500 characters or less. If you need more space, they say you can continue in the Remarks section at the end of the report. Should I have done that, I wonder? Instead of cutting right to the chase, should I have gone on and on about every gory detail?

While I'm at it, I found the online report pretty darned user-hostile. Once you complete certain sections, they lock them and you can't go back. There's no way to print the entire form -- you have to print it one page at a time, as you work your way through it. Since I was in a hurry, having put it off to the last minute, I didn't do that. I figured I could go back to the form after I submitted it, but I don't see any way to do that. My bad.

So, are you still with me? (Whatever for? I mean, people, you need to get a life!) Anyway, after that, the appointment itself seemed anticlimactic.

We checked in at the touch-screen terminal, and our interview started pretty much on time. The waiting room was kind of tight to navigate in a power chair, which I found a little surprising considering the number of disabled people that must go through there, but I don't think I caused any permanent damage. The woman who took our claim was pleasant and businesslike. I had expected to have a chance during the interview to expand on the information I submitted in the online report, which was one of the reasons I figured it would be OK to limit my responses to some of those questions to 500 characters. That didn't happen. She just looked through the report for places where information was missing. That's when I started second-guessing my decision to be concise.

Anyway, it was less than a half-hour, start to finish. It goes by fast. I didn't do some of the things I meant to do. I'm not sure I got copies of everything. I feel really stupid that I don't even have a copy of the information I submitted to them, because, having submitted it online without printing each page, I can't go back to it. But it's done.

Now we wait.

Getting our ducks in a row. Or not.

Last week, when our appointment to apply for SSDI was rescheduled, I promised myself I would use the unexpected reprieve to get all the paperwork in order. Of course that didn't happen. I have the information that I'll probably need written down in a text file, but there are two forms that I should probably fill out, and I haven't filled out either one.

The SSDI Starter Kit is a PDF I downloaded from the Social Security website. I suppose the done thing is to print the form and fill it out with a pencil or pen. Since I can't manage paper and pencil, I'd have to ask Scarecrow to help me with it. I hate to ask him to do this, not because he would mind, because he wouldn't, but because he has terrible handwriting. If they had put text input fields in the PDF I could fill it out on my computer, but they didn't.

They tell me I could also complete the report on the SSDI website, even if I plan to file my application in person. I can fill that out online all right, but they ask for different stuff than the Starter Kit. What's up with that?

I really need to deal with these difficult problems earlier in the day. So maybe I'll put it off to tomorrow morning, and be in exactly the same situation I was last week. Except maybe Social Security won't cancel our appointment, so we'll finally get this show on the road.

In chronicling my adventures with Social Security, I never claimed I would be a positive role model. Do as I say, kids, not as I do.

In other news, Ernie is doing well after his surgery, thanks for asking. He's pretty sore and he'll have a whopper of a scar, but the vet says he's in pretty good shape for an old guy. And he'll look really tough. Bareit the whippet wild man is being uncharacteristically respectful and polite.

Assisted Procrastination

I'm getting a bad feeling about this.

Around 9:30 this morning, the nice lady from Social Security called to say that they would be very busy this afternoon. She asked if we could move our 2:00 appointment up to 11:00 (no -- if we left right now, we'd be late), or do the SSDI application interview over the phone. She seemed very scattered, but hey, I've had mornings like that. We'd prefer to do the interview in person, so we rescheduled for next Thursday afternoon.

A while later she calls back. They don't make appointments on Thursday afternoon. Somebody made a mistake. (Uh... that was you?) They don't have a Thursday afternoon appointment open for another week. (Wait... I thought you said...) OK. Have they got anything sooner, if we come earlier in the day? She said she thought we prefer afternoon. Right. She said she thought we prefer to come into the office. Right. Kept coming back to this, without ever quite managing to get it together. Scarecrow said it was like trying to talk to a hamster on a running wheel. She finally said she'd have to call us back.

So, after all this, we have an appointment next Thursday afternoon. Go figure. And the person we spoke to on the phone is not the person with whom we will file our claim. Which I think will be a very good thing.

I intended to finish filling out the paperwork for this visit last night. Looking it over, I decided I could finish it up this morning. Fortunately, the Social Security lady called before I got started. I guess I can put it off for another week.

The reason that I want to do the application interview in person is that an old friend, a fellow Gordon setter person, has had a day job with Social Security for 30-odd years. The one piece of advice she offered when I told her I would be applying for SSDI was that I should apply in person. She said that when she and her husband were conducting these interviews, a face-to-face interview gave them a better sense of a person's disabilities than they could get over the phone. Since I sound pretty normal over the phone (at least, as normal as I ever did) but look totally trashed in person, that sounded like a plan to me. I have never much liked talking on the phone, anyway. She also said the online application, aside from not setting you with a real person you can contact about your application, is really not quite ready for prime time. I don't know what she meant by that, exactly, but since I wasn't going to apply online, I didn't pursue it. So, anyway. For whatever that's worth.

With all that put off for another week, our project for the holiday (US Labor Day) weekend is figuring out how the demented whippet is getting out of the yard. The fence that secured assorted greyhounds for three years is one that he has been over, and under, and through, apparently at will. It's not a disaster when he escapes. He just runs around to the front door and waits to be let in, but still. Why does a smaller dog need a taller fence? This place is starting to look like Jurassic Park.

Is That Me?

I don't spend a lot of time in front of a mirror. In fact, I don't spend any time in front of a mirror. All the mirrors in my house are at standing-up height, and I'm always sitting down. This is not an accident, or a failure of planning. I like it that way. It's no inconvenience; I don't wear makeup, I can't brush my own hair anymore, and I don't need to look in a mirror when I'm brushing my teeth. I can go for long periods without seeing my reflection.

So when I do happen to catch a glimpse of myself in the mirror, I'm always surprised. It takes me a moment to realize that I'm looking at myself. I'm neither particularly gorgeous, nor particularly hideous. Kind of average-looking, and I'm okay with that. The person in the mirror wears her surprisingly gray hair tied at the back of her neck, a style that does not particularly suit her long, narrow face.(Scarecrow willingly brushes my hair and ties it out of my way, but styling and blow drying would be asking a bit much.) She could stand to moisturize more. Her hands look particularly crippy -- bony and wasted, clenched into fists, covered with age-spotted elephant hide. They don't look like they're good for much. (They aren't. But I guess a little hand lotion wouldn't hurt, either.) And that chair! Or is it a tank? (It's a tank. A Permobile C300 power chair. I'm sitting on it, so I guess I forget what it looks like. But hey, it's basic black.) She looks like she was poured into it. Why doesn't she sit up a little straighter?

It must be like going to a high school reunion, and finding that everyone else sent their parents. (My 40th would be this year, if they were having one, which they aren't, and I were going, which I wouldn't.) One of my best buddies when I was a kid sent me a recent picture of herself. I was gobsmacked. She looks just like her mom.

It's kind of like that. Every time I look in a mirror. The crippy hands and the power chair I can blame on MS. I think the gray hair and general decrepitude is just gettin' old. I guess I could spend more time on my appearance (Correction: I could have Scarecrow spent more time on my appearance.) But I really don't give it much thought. It's not a problem as long as I don't look in a mirror.

Just, please, don't tell me I look like my mom.

Scarecrow just stuck his head in to tell me we have an appointment to apply for SSDI next Friday afternoon. I'm so looking forward to this. Really. It'll be fun.

Not working is hard work

Queen of Procrastination that I am, I fiddled around all morning, getting nothing much done. I really did not want to go back to the next step in preparing to file for SSDI -- itemizing everything that's wrong with me, and describing how it keeps me from working. It wasn't fun yesterday, and it wasn't fun today either. But I finally did it. At least, I worked at it some. I got to where I can put it down for a day or so, and come back to it. If Scarecrow gets around to making us an appointment with Social Security (which ain't gonna happen today, because it's getting on to 4:30 and they close at 4:00) I'll be seriously motivated to take another run at it.

The insurance company called to verify some dates on my short-term disability claim. It's really not that hard. My last official day at work was August 14, but I actually stopped working June 19. I've been using up accumulated sick leave and vacation time since then. But when the insurance guy asked when I became disabled, I didn't really know what to tell him. Five years ago? Two months ago? Last week? It's not like I got hit by a truck. Anyway, we managed to get each other thoroughly tangled in terminology. The HR lady at work finally got it straightened out. I think. But this is a good sign. They got my claim, and they're thinkin' about it.

Who knew not working would be such hard work?

Fun with Forms. And applications. And worksheets.

My insurance company called to tell me they received my short-term disability claim. They say they'll need to ponder for 10 days or so, and they'll get back to me. So, for the moment, it's off my desk and on someone else's. Step one: Apply for short-term disability -- check!

Since I had a head of steam up, I downloaded the SSDI Starter Kit from the Social Security website, and started filling out an Adult Disability and Work History Report. I don't intend to apply online, but I have to get the information down somehow, and an online form lets me use voice recognition. The alternative is printing out a PDF, but the whole pencil and paper thing just ain't workin' for me anymore. So I start filling out the online form, but I'm totally put off by the limits they put on the amount of time you can spend on each page. It's plenty of time, really -- it just bugs me. So I started working through the Social Security Disability Benefit Guide from the MS Society instead.

After spending much of the day thinking about all the doctors I've seen, all the medications I take, all the procedures I've had done, all the symptoms I have, and all the reasons they keep me from working, I've got to tell you I'm feeling like one pretty darned pitiful remnant of protoplasm.

It's not that I ever forget I have MS. Since April of 2002, I've been aware of it every second of every day. I just don't think about it that much, if you know what I mean. I'm not your cheerful, optimistic, silver lining-type person, always looking on the bright side of things. Most emphatically not. I'm just usually focused on whatever it is I'm trying to do, rather than all the ridiculous hoops I have to jump through (metaphorically speaking, of course, since my actual hoop-jumping days are long past) to make it happen. So when I have to spend the day itemizing everything that's wrong with me and listing all the things I can't do anymore, it makes for a reasonably crummy day.

My usual response would be to put something like this on my "Put off forever" list, but Scarecrow is, at this very moment, making us an appointment to talk to the nice folks at Social Security. So I will come back and work on this again tomorrow.

But I'd rather stuff earthworms up my nose.