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Posts Tagged ‘Medicaid’

I have not wanted to write here.  I am only going to spout lots of depressing crap in this post, so if you don’t feel like reading it, please feel free to skip this one altogether.  It reads too much like a diary and is too personal.  I admit things I don’t want to admit.  I’m this close to deleting the whole damn post.  In fact I want you to skip it.

Sigh.

When my mom and I drove down to visit Jonah last Saturday it was difficult all around.  Andy had taken Jonah the night before for an overnight visit, and Jonah didn’t fall asleep until 5am.  I don’t know if it was the heat that kept Jonah up or what, but as a result Andy was exhausted.  At first the only discernable effect on Jonah was a strangely voracious appetite, asking for one food after another, though later he napped against the window on his car ride.

asleep in the car

asleep in the car

He refuses to have all 3 of us in the car, which almost always means my mom has to stay back at the apartment while Andy and I drive him around.

This time we tried to force the issue, but Jonah wasn’t having it.  My mom got in the back of the car with him and Jonah immediately attacked her, pulling her shirt and scratching up her shoulder.  So as usual she went inside and watched Fox or QVC or whatever the hell on TV.  But she’s sick of it, the whole thing, the making sandwiches for all of us ahead of time and driving an hour and a half every week to bring Jonah gummy bears, chips, special treats, then visiting him for 10 minutes and being left behind.  She’s tired and she doesn’t want to do it anymore, as much as she loves her grandson.  Then, to add to it, Andy and I have been arguing on the car rides recently and sometimes I come back crying, and that pisses her off too.  She yelled at me on our ride back home, demanding why can’t two people get along for 3 hours once a week?

I have no answer.  I don’t know why.  It was never a problem before.

There is so much frustration in everything that has to do with Jonah now.  God help me but sometimes I don’t want to drive down either.  Back home I sit in Jonah’s room sometimes — I’ve got it decorated like a guest room now:

Jonah would destroy all of it with one sweep of his arm

Jonah would destroy all of this with one sweep of his arm

I look at it all and then close my eyes.  I picture the room as we’d prepared it before he was born:  the pale green checkered curtains and light wood crib with matching green checkered bedding.  The toy box, bookshelf full of baby books, closet & dresser full of tiny clothes.  The before.  And the wee baby days when Jonah was sweet, strong, holding his head up early, walking early.  We all thought he was so very healthy, so uniquely intelligent.  I’d nurse him on my lap and balance my own dinner on the edge of the boppy pillow, gazing down at my beautiful son, our eyes meeting with love.

"those were the days"

“those were the days”

“And you know where you were then…”  I sigh too because sweet, innocent, dingbat Edith (Jean Stapleton) of my favorite show has died, “stifled” all too soon, even if she was 90.

Now we don’t know where we are, or what to do to solve anything, and more questions, trouble, worries appear on the horizon of each day.  I have no health insurance for 90 days, and I can’t afford COBRA.  I need to find out what insurance paid for which doctor and what medicine so I can ensure Jonah is still covered for everything he needs through Medicaid disability.  Andy wants to get a divorce now (we are currently legally separated).  He has been saying for some time that he no longer wants me to help him monetarily — not with health insurance, not with car insurance, not with anything — going so far as to tell me (in a moment of hyperbole) that he’d never talk to me again if I paid for any of his expenses.  Maybe the divorce will give him closure; maybe it will make him less angry at me so much of the time.  I don’t know.  But even a no-contest divorce through our mediator is more expensive than I guessed.

And I keep thinking I should make an appointment with Jonah’s psych doctor, talk to her about weaning him off the cocktail of meds which are supposed to mitigate the anxiety and aggression, then put him back on them one at a time to see what works and what doesn’t…but I’m not sure it’s the right thing to do and I’m not sure who can tell me or how damaging it might be for Boo to put him through that.  Plus I want his eye to heal first.  I don’t know what to do.

Andy took him to the eye doctor in Rhinebeck today.  When he called me tonight to give me the daily “Jonah report,” he told me the eye doc checked Boo’s vision in the left eye…and that now Jonah can’t see anything out of that eye at all.  My heart stopped. You mean all this has been for nothing?  The operation…the hell week afterward…the anguish and the aggressions and the all of the everything?

Evidently Jonah can’t see out of his left eye because it has hemorrhaged somewhat and there is still blood in it, blocking the retina, so the doc was not over-alarmed. But Andy says it will take a very long time for the blood to clear.  Does it mean Jonah will have to wear the eye shield for another week?  Another month?  Does it mean that when the blood clears, he will be able to see again?  We don’t know.

We don’t know what is going to happen and we don’t know how to visit with Jonah and we don’t fucking know.  Andy took Jonah for a while today and Jonah attacked him twice when they were having “quiet time” lying on Andy’s bed.  Other than that he was good, Andy told me.  Other than being attacked twice…

On Sunday M and I went to church, a non-denominational Protestant Christian church his co-worker goes to in Schodack.  It was the first time in decades I’d been to anything but a Catholic Church.  I suppose it should be easy for one raised Catholic to go from the seeped-in-ritual Mass to the virtually ritual-less service of this kind of place — at least easier than if it were reversed, and one had to try to unravel all the movements and prayers of the Catholics.  But the pastor spoke about the story of Abraham and how God told him to sacrifice his son.  I started to cry, of course, silently, drawing an immediate parallel to my own life, and I couldn’t stop the tears through the whole service.  I felt like an idiot, though M assured me afterward that it was a perfectly fine place to have tears rolling down your face.  I suppose I should be glad of that.  (Of course, in the Bible passage, as soon as Abraham agreed to sacrifice his son, God changed His mind and let the child live).

My little Boo, the sacrificial lamb.

We gave him up all right, but for what?  He’s been at his residential school for nearly two years, and though he has learned a lot, his aggressions haven’t gone away at all.  If the medicine is mitigating the aggressions, I shudder to think of what he would be like without them.  He is now older, stronger.  Are they simply managing him?  No.  He is learning and he does have good days of joy and peace.  But still he moves lightning-quick to strike and slap and pull hair, to hit, to kick, to hurt whomever is in range, even when he has just been given something he wants – even when he seems perfectly happy just microseconds prior to the aggression.  It’s as if Andy and I have permanent PTSD.  Or just TSD, because there isn’t any Post.  It’s ongoing.  I am ashamed to say it but I am grateful I do not have to take care of my son; I am grateful he is not in my home.

And now I will admit the most shameful thing of all:  sometimes, on the worst days, I become ignorantly envious of parents whose children sicken and die, and for this simple reason: because there is an end to it. 

No, of course I don’t want Jonah to die.  And I am not really envious of parents whose children die.  I know it would be horrible, beyond my imagination or comprehension.  It’s the end to it that I want. 

I just want an end to it. 

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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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