Getting Worried

My Social Security hearing is just less than a month away, and I'm really starting to stress out.  Not because of the hearing itself, although that's scary enough.  What's worrying me is the financial state of the union and how that might affect my chances.

As of this evening the Republicrats are still squabbling over the budget.  If they haven't come to some sort of agreement by Aug 16 I'm afraid I'll be denied again, not out of merit, but because they can't approve anyone until the new budget is in place.  In fact, since I doubt anyone considers Social Security adjudication to be a vital service, I wouldn't be surprised if my appointment was cancelled all together.  And lord only knows when it would be rescheduled for.

So that's what's keeping me up at night this week.  Stupid politicians who will never have to worry about where to find the money for food or medicine or anything else for the rest of their lives, fucking with mine.

Edit: And here's a little something directed to the politicians.

I Have a Date

A couple weeks ago I got a call from my lawyer.  The government has scheduled a hearing date for my Social Security appeal.

This was a pretty big surprise.  The waiting list for these things is insane.  I was told that it was running 18-24 months here in the Indianapolis area, and that because I moved while on the waiting list, I'd be dropped to the back of the line again.  No saving your place!  No cutsies!  I wasn't expecting this for another year to year and a half.

I've been working my way through the system for almost two years now, and every time I get to a new level it comes with a new surge of anxiety.  Fear that I won't be approved, and my financial situation will continue to be dire.  Fear that I will be approved, and I'll have final, incontrovertible proof that this is happening, and that I'm really this sick.

I think that second one is the greater fear.  On many levels I think I've dealt with and accepted my illness, but there are always deeper levels of denial to discover.  Getting Social Security after all this time of fighting for it will make it Official.  I will be a government-recognized sick person, who isn't able to work and financially take care of herself.  (The irony in all this is, the minute you are approved, after years of hassle in most cases, the government starts pushing back-to-work programs at you.  If you were capable of getting back to work, they never would have approved you in the first place.)

Also, I'm scared about the hearing itself.  In a very literal sense I will be sitting there, allowing some stranger to judge my health and how I've handled it so far.  After my first couple of doctors, who simultaneously claimed that there was nothing wrong with me and that my illness was all my fault, the thought of having someone judge me in this way is scary.  And it's not just someone who wants to judge me.  Lord knows there are enough of those in the world, willing to judge anyone at any time for any reason.  This is someone who will judge me and then decide if I deserve the help that I know I need.

Really, the whole thing is turning me into a big fucked up ball of stress and nerves and guilt.  Which of course does wonderful things for my Crohn's and Fibro.

So if you would, please get those FGBV machines rolling.  That I survive the next 6 weeks or so, and that on August 16th all the SSDI judges are in a sympathetic, accepting mood.

I Really, Really Wanna Go

If you're at all plugged into the book world, especially anything to do with romance, you probably noticed that the RT convention was last week.  I've been wanting to go for a long time, but with one thing or another-- the expense, travel, work, being sick and having no money-- I just haven't made it.  Next year it's in Chicago, and I really want to go.

There are a couple of things holding me back at this point.  One is the expense.  This is not a cheap convention.  It's almost $500 just to sign up.  If I don't have a roommate, which with my weird sleep and bathroom habits would probably be best, I'm looking at about another $800 would be my guess.  Transportation shouldn't be a biggie.  Amtrak has a train that runs from Indy to Chicago, and the schedule looks like it should work well for me.  Only $50 round trip, and I don't have to borrow one of my parents' cars for almost a week, pay for parking, and then be alert enough to pilot it for several hours.  All together, I figure this thing will cost me $1,600.  If the social security comes through between now and then, it might be doable.  If it doesn't (and I've learned at this point not to bank on anything when it comes to the government turning over the benefits I'm owed), then there's no way in hell I can afford to go.

The second problem is as much a deal breaker as the money.  Can I physically handle it?  At this point a trip to the grocery store wears me out.  I only leave the house on average about once every 3-4 weeks.  Am I going to be able to manage 5 days of workshops and brunches and chatting in the hotel bar?  I can tell you right now that there are some events I'll take a pass on.  The cover model pageant?  No, thanks.  The awards ceremony?  If an author I really love is up for an award, and present to accept, maybe.  But I'll likely skip that, too.  In fact, I'd probably skip most of the evening parties.  I expect to be nearly comatose from exhaustion and over stimulation by dinner time most days.  I don't know if I can do this, and I'm afraid that it will end up making me really sick.  But I still want to go.

Why?  I want to connect with readers in real life.  I'm getting active on Goodreads, and I have all my Betty friends.  It would be beyond awesome to get a chance to meet a few of them.  And then there are all those other people out there who love to read and talk books.  There will be authors there.  Maybe I'll get a chance to meet some of my favorites!  And as much as anything, it would be amazing to go out and do something like a normal human being.  A late-thirties adult woman who actually goes places without her mommy and daddy taking her.  Adult socialization with someone I'm not related to.  NO Little House on the Prairie or The Waltons on TV in the background.  Does that not sound magical?

So, all I have to do is convince the government to give me my money and then somehow find the energy to manage a five day conference.  Yeah, not likely to happen.  But I still really, really want to go.

Happy Days Are Here Again!

Another round of good news on the medication front.  My doctor's office called this morning.  The makers of Savella (my other Fibro medication) approved my patient assistance, and there was 3 months worth of free meds waiting for me at the office!  Yay!  My Fibro meds are the only ones I take that are too new to have a generic, which means they are the most expensive.  Now that I'm getting both of them for free, my monthly med costs have gone down by about 3/4.  That's huge-- a significant line item in the monthly budget slashed.

In other news, I've got the Kindle down to 724 items.  So far it hasn't made a bit of difference.  In fact, the battery is dying even faster.  But that might be because of all the clicking around to delete stuff.  I'll go back to more normal usage for the next couple of days and see if there's any improvement.

And more good news-- I have a solid story idea to work on.  Last night I was thinking about a story I started almost 15 years ago and abandoned.  The actual pages are long gone at this point (trust me, it's no loss), but the idea lingered.  As I was falling asleep last night it fused with another scrap of an idea, and suddenly I have a viable story idea.  In the next few days I'm going to work on Kelley Armstrong's Outlining 101, and then I want to start writing March 1st.  I'm not going to push myself to NaNo it.  I'm afraid I'll flame out in a couple of days at that kind of pace.  But I'd definitely like to finish March with a nice chunk of pages.  I've also had a little bit of a brain wave about the story I was working on last fall during Discovery.  So I think I may end up outlining both at the same time.  We'll see how confused I get.

Lip Balm Flavor of the Day: Gingerale

Another Country, Part II

I started this as a response to Julie's comment on the last post, but it grew until it just seemed smarter to create a whole new post for it.  So here you go.  Visiting the Christian Book Store, Part II.


I try to keep my snarky opinions to myself in these situations, because as much as I think this stuff is ridiculous, the rest of my family has an honest interest in some of it.  (Not the more junky stuff that I made fun of here, but the books, music, and movies are of definite interest to the fam.  My brother and SIL stood around giggling with me at some of the more out there product offerings, so it's not like they hold the scripture covered lolly pops as sacred or anything.)  They've all been amazingly good about not pressuring me to attend church.  I don't want to repay that with even the appearance of ridiculing their beliefs.

Underneath all the eye rolling, I'm kind of disturbed by what stores like this represent.  Christian merchandising is a multi-million dollar enterprise, and to me it just feels really cynical and oily.  I can't shake the idea that the people who make and sell most of this stuff do it only because they know they can sell anything if they can find a way to make it "Christian."  And a whole group of people who are too young in age, too new in their faith, or just gullible are gobbling it up as fast as they can crank out some new piece of crap.

I know that there are New Age stores doing much the same thing.  It's not restricted to the Christian market.  And maybe I'm letting my prejudices show here.  But it just seems so much more overwhelming in the Christian community.  Did you know that churches, especially mega churches (Texas is the land of the mega church, so I have some unfortunate experience of this), have gift shops now.  You can get mugs or tshirts or bottled water with the church's name and logo on them.  And signed copies of the minister's latest book.

The prices on all this stuff are outrageous, too.  My parents joined a Bible study at church, and although there are three Bibles on the bookshelf in the living room right now, none of them are the translation they needed, and they have a couple of expensive study Bibles still packed somewhere, but who knows where they are?  So Mom went to a different Christian store last week and bought two more Bibles, one for each of them.  She lucked out and the store had some on clearance.  She got two copies at 50% off.  She still paid $50 for the pair.  That means each Bible was originally priced at $50.  That's a lotta moolah for a book that's been in print for hundreds of years and could be downloaded as a free ebook from Amazon.  (That's not a judgement on how they choose to spend their money.  That's outrage at greedy publishers and store owners who choose to ask that kind of money.)

I know I made fun of all of this yesterday, but it just makes me sick when I see people being taken advantage of in the name of faith.  I know there are other things my parents could have done with that $50, but they felt they had to spend that money to participate fully in their faith.  The lady in line ahead of me at the store last night bought $90 worth of stuff.  I honestly have no idea what she bought, I was busy goofing off with my brother and SIL at that point and just happened to hear the cashier give her the total.  But she definitely looked like she could have put that $90 elsewhere.  Like maybe shampoo.  (Not that I have a lot of room to talk.  I woke up this morning looking like Helena Bonham Carter at the Golden Globes.)  Again, I'm not judging anyone's choice in how they spend their money.  I'm mad at the church culture that pressures people to have these books to participate in their religion, and the stores and publishers that set the prices so high, knowing that there are people who will pay their prices no matter what.

Are those supposed to be dreads or what?

Why I Hate the Drug Companies

This afternoon I crossed state lines in an attempt to buy prescription medication.  In the good old days (you know, like August) I could go down the street and get a prescription from my local pharmacy for $30 because I had prescription drug coverage through my insurance.  Now I am uninsured, but I still need medicines, this one particularly, because it's a steroid and you can just stop those puppies cold turkey.

So I called around last week to find out who had my prescriptions for the best prices.  Target was the winner with this one at $1011 for a one month refill.  That's right.  One month.  So, plan B.  I remembered I had a card from the drug company that would help me pay for this medication.  So I took it to Walgreens, where I was picking up another prescription at the time, and asked them to check it out.  Turns out the card is worth $500.  Woo hoo!  But it's good everywhere but Massachusetts, where I currently live.  sigh.  Time for a new plan.

So I take my prescription bottle with all the info on it and my magic card to a Target across the state line in New Hampshire.  No big deal.  It's not that far away, and my parents had errands they wanted to run in the area anyway.  I give the bottle and the card to the pharmacist, explain that I'd like to transfer my prescription to Target and get as many pills as the $500 card will allow.  Call me if there are any problems.

An hour later I'm sitting on a bench in the mall, waiting for my parents to do something or other, when I get a call from Target.  They're very sorry, but they can't get the card to work.  You must have primary insurance that will pay for at least part of the prescription, and then the card will cover the rest, up to $500.

Hell.

After suppressing the urge to throw things, I asked her how much one week of the prescription would cost.  $232.26.  Fortunately, steroids require tapers, and one week of the prescription as written is actually three weeks of medication for me.  (You're supposed to take 1 pill a day for 6 weeks to safely taper.  It's going to be more like 30 days.)  So I gritted my teeth and bought the damn drugs.

And then I had a perfectly miserable time thinking of all the things I could have bought with that $232.26.

• 1/3 of a month's medical insurance premium
• a car payment on my beloved Toyota that I had to sell when I moved here
• one of the super fancy Tivos that I was drooling over the other night
• a month's supply of three other prescriptions put together
• almost 5 months worth of cell phone service
• 29 books for my Kindle

Clearly, there are other things I could have spent that money on.  Why was I in this predicament?  (Other than the fact that I have a chronic disease that I did not ask for and have no control over.)  Because a drug company gave out cards offering to pay for $500 worth of medication, medication that is criminally expensive to begin with, and then refused to allow people with out insurance, the ones who really need it, to use the card.  How fucked up is that?  When I had insurance the card wasn't worth the hassle.  Now that I desperately need the card, it won't work because I don't have insurance.  What this drug company has done is place advertisements in doctors' offices (which they aren't supposed to do, right?) and called them patient assistance cards.  They placed these cards knowing that they would never have to pay on the vast majority of them because for the vast majority of us they are worthless.

Bastards.

One good spot in all this mess-- I got a $10 Target card from the pharmacist.  I think she felt bad for me.  I'm going to save it just in case I need more of this medication.  It will almost buy me one pill.

Great Googly Moogly

I spent part of the day today calling pharmacies and pricing my most urgent prescriptions now that I don't have insurance or prescription drug coverage.  Never do this.  It's too depressing for words.

I only priced the four that need to be refilled in the next two weeks.  No point in going through the hassle if it doesn't need to be refilled yet, because the prices might be different in Indiana.  One of my prescriptions-- just one prescription, for one month-- is $1011.49.  And that's the cheapest price I could find for that one.  It's a steroid, and I've been weening myself off of it anyway, so I may just take my last nine pills and hope for the best.  I have a bottle of Prednisone for emergencies.  It plays merry hell with the body, but it's cheap.  If I start to crash and burn without the other steroid I'll just start up on the Pred.  I could buy a couple of years' worth of Pred for the price of one month of the other stuff.

I will say one thing for my thousand dollar steroids.  They make my $130/month Savella look mighty cheap in comparison.  And the Savella, at least in the short term, would be much more miserable to go off.