Aug 082012
 

I’ve been feeling quite a bit under the weather recently while having a lot to get through. I took a break for a while. I hadn’t meant for it to turn into two months.

One of the things on my plate had been yet another appeal to the evil pharmacy management company I’m now forced to get my prescriptions through. This isn’t related to bookbinding or art except on a personal level, since without the medication they’d suddenly denied me, my ability to function even minimally in my studio would’ve been quite up in the air.

Last year, we were under the power of a different company. Last year, I had an approval for a drug that is the difference, for me, between bedridden somnolence from M.S. or being clearheaded enough and having enough stamina to occasionally do things like, say, make a book once in a while. Without coverage, the medication is around $1,000 a month. The difference for me is so dire that we coughed up the money for a couple of months after I ran out and my appeals dragged on. But obviously that was not going to be sustainable.

The pharmacy benefit manager said that no study showed it worked for M.S.-related “fatigue” (which is a whole lot worse than what “fatigue” sounds like). The pharmacy benefit manager lied. Almost all of the research says it works. And the latest research actually shows that it not only helps significantly, but that people like me who take it long-term actually wind up less disabled down the road than people who don’t take it. I finally appealed to the state. And now, what do you know, I was told that not only has my drug been reinstated for me, but that the company is changing their criteria and will now approve it for M.S. It took 7 months to get there and required a lot of research and buying medical journal articles to show how much they’d lied. I’m grateful for me, but am so depressed for others out there who don’t have insurance coverage at all or who don’t have a university background (I was at one time a graduate student in linguistics. I know how to find things.) My doctor was angry and willing to write letters and call too. In all, it was a rotten experience that took a lot out of me for a while.

But not all has been bad. I had a book accepted into the next We Love Your Books show to take place later in the year (more on that soon). And I’m working on my first Book Art Object edition, a board book called Superstition.

And I got a kitten last week. Yes, I decided that three cats weren’t enough. I need to clean cat boxes even more often. I’m well on my way to being a cat lady.

I walked into a pet shop last week and, damn me, I fell in love. I now have four cats, three of them black. His name is Stephen. He’s going on 5 months old and growing by the day. And all he has to do is flash those sweet baby eyes at me and the latest torn up plant in the window is soon forgotten.

As you can see in the photo, he likes to sit on my lap at the computer (which has a weird but wonderful ergonomic keyboard that’s made it possible for me to continue to type in spite of pain in my hands). The mug next to the keyboard, you can’t see, is actually a chipmunk mug.

Little Stevie also likes paper…

I’ve also been indulging an obsession for board books, and will be teaching a workshop on how to make them for my local book arts guild this weekend. More on that and probably a tutorial coming soon (or at least sooner than 2 months from now).

[Update a few years later: I have since been undiagnosed with MS. I still have a neurological disorder and significant fatigue. It just is now nameless.]

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  6 Responses to “I have not been abducted by aliens”

Comments (6)
  1. Wow, Ellen, I had no idea you were afflicted with MS. I’m so sorry about your plight with the system over medication. Thank goodness it turned out in your favor after all your hard work. Congrats on your new kitty! See you this Saturday.

    • Thanks Connie. I hesitate to mention medical stuff on here, but it is such a big part of what’s going on. The Vector years were back when it was still misdiagnosed as a pain syndrome (which it was for a long time). Interestingly, a couple of the saner PTs I saw thought it was MS, as did a friend of mine with MS. It took the neurologists 10 years to catch up. I finally was diagnosed 2 years ago, although I’ve had it for at least 12.

      Little Stevie is keeping me company trying to unplug/eat the computer cord. Oh dear…

      I’m so glad you’ll be there! I’m still working on the directions. This past week has been one of the “off” variety… I’m feeling so behind! But it’ll be fun.

  2. I am so pleased that the aliens haven’t yet come to take you away. And truly thrilled about the book you had accepted into the next We Love Your Books show. Not to mention your next board book. Stevie is enchanting.

    • The aliens might not have removed me from the premises, but there are times I swear I think I’ve actually had the probing… if you know what I mean…

      So very good to hear from you! Thanks. And Stevie is enchanting…when he behaves. Last night I was beginning to wonder if we’d made a mistake. He got his first taste of table scraps–real bird parts off of the other half’s chicken dinner–and turned into a wild, growling beast as he pushed the others from their bowls. A new side to sweet little Stephen… Essentially, he is rapidly entering his adolescent phase.

  3. I’m so pleased you were able to fight for your medication and win. Honestly! I think I hate pharmaceutical companies even more than the banks. Sick people should not have to fight for stuff they need, particuarly when the research shows it lessen disability down the track, which will of course save money (which is the only language that seems to be understood these days).
    Have you started to feel the benefits of your meds or does it take a while to build up to a therapeutic level?
    Congratulations on your selection for We Love Your Books. Successes like that along the way are so important and rewarding, aren’t they? I find it helps to make me feel I am still part of the “real world”.
    I think Stevie is terribly cute! You seem very patient with his kittenly destructiveness. Mia is nearly 4 and she still has a very bad habit of chewing through expensive electical cords eg for the iPhone and chomping on corners of new books left lieing around. Ah well, as I read in an interview with a textile artist who was asked about how she got on letting her cats into her sewing studio: “you can’t manage cats, so you have to learn to manage your threads”.
    Hope you are starting to feel a bit better. xox

    • Only a month belated here… yike! I thought I’d replied to your kind comment before, but see here that doesn’t seem to be the case.

      This particular med has a pretty immediate effect. It actually doesn’t work as well as it did a couple of years ago, but is still much, much better than life without. I did write as part of my appeal that my medical costs would rise as a result of preventable disability if they wouldn’t let me have it. As you say, it’s the only thing they understand. Despicable.

      The quote from the textile artist is spot on. One of Stevie’s less adorable fixations is house plants. There’s one in particular that I’m quite fond of that he won’t leave alone. I moved it, thinking that in a harder to reach location he might give up, but it made no difference. It’s a type of vine and he likes to jump in the pot and try to climb the support and tear off the leaves. I asked the vet what we could do. She said get rid of the plant. Nothing will work once they’re determined. Sigh…!

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