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Posts Tagged ‘Humira’

I don’t know if this is a surprising fact or not, but I’ve never read my blog all the way through.  But sometimes I read old entries, especially when they show up on my “top posts” list – partly, I guess, because I wonder how or why certain entries ended up there.  And partly to see how often I say the same shit, or whether or not I’ve ever given a blog post the same title twice.  And partly to document events & things I will otherwise flush down the memory toilet.  And for a bunch of other reasons.

One thing I realized is I start stories and then don’t finish them.  Like the whole Humira saga, when I had to pay more than two thousand dollars out of pocket for Jonah’s medicine and then fought through miles of red tape for weeks to get reimbursed – and even then only with the help of a few incredibly kind, kick-ass professionals.  I never re-visited that story.  Maybe I just forget to re-visit things…0r even mention them in the first place.  So today for you I have a list of stuff I’m pretty sure I never talked much about.  Some are opinions.  Some are confessions.  Some are boring.  All are true.

1.  I got reimbursed in full for Jonah’s $2k Humira refill.

2.  In ten days, for ten days, I am going on vacation to Waikoloa, Hawaii.   (Yes, my house is being watched).

3. I have been living from Guster show to Guster show for a few years now; this truth became evident when I realized I immediately purchase tickets the moment they are available, each and every time I get a tour announcement e-mail from them.  Just bought tickets for yet another show; they’re playing near Boston with Dispatch.  Someday Jonah will come with us.  I hope so anyway.  (They’ll have a summer tour on top of this and I’ll buy tickets to at least one show on that tour, too, the moment they are made available to me).

Saturday June 8th
Mansfield, MA @ Comcast Center w/ Dispatch
$42 – All Ages – 6PM
Ticket Presale (January 28th @ 12PM, use code “CIRCLES”) | Info & Facebook RSVP

4.  More and more often I find myself wanting to find ways for Jonah to swim.  He is so happy in the water.  There is a hotel near my house that offers an indoor swim club, and there is always the Center for the Disability Services, though their pool is literally 90-something degrees and necessarily full of chlorine.  Maybe Andy can help me find a place down near where they live where we could bring him.

5.  I secretly (well, obviously not so secretly) love that Jonah sucks his thumb.  He does not flap or rock, but he does walk in circles, and he loves to suck his thumb.  I even love the way he sucks his thumb (watch the end of yesterday’s post‘s 19 second video).  Maybe it’s because I was a thumb-sucker too.

6.  Sometimes I feel happy that I have more freedom now that Jonah doesn’t live with me.

7.  Sometimes I feel guilty for feeling happy for feeling free.

So it goes.

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fail

I guess I’m one of those people
who have a difficult time this time of year,
when everything is dark
and the days fly quickly
from one night sky to the next
in a foggy blur of countdown-to-Christmas,
the December rush and push and prepare
and pressure at work to do very well
at a very hard time of year to do well at all.
None of it feels okay to me right now.
I’m panicky, quivering.

I feel beaten down.

It’s almost too difficult to get into the whole Jonah mess but then, after all, this is a blog about him.  Last Thursday the school called to tell us he fell off a chair and had a few scratches on his back — but when we picked him up on Saturday he had a huge bruise on his buttock and a smaller one on his l0wer back.  I guess the nursing department felt they didn’t need to inform us because it was all part of the same incident they’d already told us about, but nobody at his house told us anything either, so we were shocked when he wanted bath and we saw him all black-and-blue.  I would post a picture but for fear of some sick pedophile looking at it for kicks.  As it turned out, the house caregivers thought the nursing department had told us.  They were sincerely concerned and, in fact, the nurse had just checked on Jonah Saturday morning before we got there.

Earlier in the week we’d learned Jonah has been without his Humira because of a delivery problem, and that they’d called his doctor who said it was okay if he missed a dose.  Turns out the “delivery problem” was that Caremark, the pharmacy folks who deliver his meds, would not release the medication until a $2,077 copay was remitted.  After taking a half a day off on Thursday to make calls and figure this out, I managed to get the name of his new Dutchess County Medicaid worker, but had to call about 7 times before I got her.  Usually the phone is busy, and sometimes it rings and rings until a recording says, simply and harshly, “you cannot leave messages in this mailbox.”  Then I had to fax shit over to her.

Then I had to call my primary health insurance company and his school, sift through all the red tape and bullshit, and still have no answer as to why, with primary and secondary insurance, I owe a co-pay of $2,077 for every dose of Humira my disabled son receives.  So, faced with no immediately forthcoming solution, I used my credit card, called Caremark and paid them to get my son his medication the very next day.  Merry Christmas!  And all that money is just a copay, and only for whatever they consider one refill.  Supposedly there are grants you can apply for, and maybe I can see if Medicaid will reimburse me, but at this rate I can afford about one more refill before no more Humira.  I’m working on figuring it out.  Maybe he doesn’t really need it so much; there has to be some other generic medication. I should call my pharmacist cousin.

(Wait’ll I tell you about the non-refundable vacation I booked in November.  Another post).

And to top it all off, my sweet kitty Almanzo is gone.  We haven’t seen him since Monday morning.  I put posters up around our neighborhood (Beacon Avenue near Berkshire Drive, Russell Road, State Office Campus) offering a $100 reward.  Then I put an ad in the Times Union in print and online, and on the Mohawk Hudson Humane Society website.  Damn it, I miss him.   He was just getting so he’d sleep with Jack and lie in my lap so I could pet him.

O

We adopted him from the Mohawk Hudson Humane Society in (I think) July of 2011.  He was 4 then and they didn’t know what his life had been like.  I wanted to keep him an indoor cat but it was crystal clear he was an outdoor cat;  he has always longed (incessantly and loudly) to go outside.  I’d rather have a happy cat than a miserable one, even if it means he is gone from me.  He was a hunter — had such fun chasing and catching critters, mice and such (though I always hated when he got a bird).

I’m rambling, my fingers shaking over the keyboard.   I need a little blog break, maybe for a while.

Manzo, please come home.

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