Friday, August 16, 2013

Punch Drunk, Insane and Bitter

to Erika

Ellen Burstyn in Requiem for a Dream
I imagine that I look like this, often

One of the superlative benefits of having a child with a disability, particularly a seizure disorder, is that I've found and become friends with some of the funniest people on the planet. I don't think of myself as funny, but I do acknowledge a superlative sense of humor, particularly a dark one. I got two pieces of mail yesterday -- one in my inbox and the other by snail. The online mail was a cheery notice from the manufacturer of Onfi, or clobazam, the drug that warranted my 4,325,792 posts titled Drug Mule over the last couple of years. In a nutshell, it cost me just under $500 for a one-month supply with private insurance and $61 for a one month supply when I traveled to Canada or had a friend bring it to me. We currently get a one-month supply from a local CVS for $0 thanks to a grant we received from a beautiful non-profit organization that helps those having difficulty paying for expensive drugs. The fact that the beautiful non-profit receives large contributions from the manufacturer of Onfi who then, I imagine writes those donations off,  is beside the point. I'm just saying, as they say.


I got this notice from the manufacturer of Onfi that the company is now making scored tablets and a suspension of the drug. Here's a copy of the photo at the top of the email:

That's followed by a photo of the new scored tablet, but I can't copy it for some reason. Then comes some information about the drug itself: 

ONFI (clobazam) CIV is a prescription medicine used along with other medicines to treat seizures associated with Lennox-Gastaut syndrome in people 2 years of age or older.
Important Safety Information
ONFI can make you sleepy or dizzy and can slow your thinking and make you clumsy which may get better over time. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ONFI affects you. Do not drink alcohol or take other drugs that may make you sleepy or dizzy while taking ONFI without first talking to your healthcare provider. ONFI may make your sleepiness or dizziness much worse.
ONFI can cause withdrawal symptoms. Do not suddenly stop taking ONFI without first talking to a healthcare provider. Stopping ONFI suddenly can cause seizures that will not stop (status epilepticus), hearing or seeing things that are not there (hallucinations), shaking, nervousness, and stomach and muscle cramps.
ONFI can be abused and cause dependence. Physical dependence is not the same as drug addiction. Talk to your healthcare provider about the differences. ONFI is a federally controlled substance (CIV) because it can be abused or lead to dependence.
Serious skin reactions have been seen when ONFI is taken with other medicines and may require stopping its use. A serious skin reaction can happen at any time during your treatment with ONFI. Call your healthcare provider immediately if you have skin blisters, peeling rash, sores in the mouth, hives or any other allergic reaction.
Like other antiepileptic drugs, ONFI may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any symptoms, especially sudden changes in mood, behaviors, thoughts, or feelings, and especially if they are new, worse, or worry you.
Tell your healthcare provider about all of your medical conditions including liver or kidney problems, lung problems (respiratory disease), depression, mood problems, or suicidal thoughts or behavior.
If you are pregnant or plan to become pregnant, ONFI may harm your unborn baby. You and your healthcare provider will have to decide if you should take ONFI while you are pregnant.
ONFI can pass into breast milk. You and your healthcare provider should decide if you should take ONFI or breast feed. You should not do both.
Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements, as taking ONFI with certain other medicines can cause side effects or affect how well they work. ONFI may make your birth control medicine less effective. Talk to your healthcare provider about the best method to use.
The most common side effects seen in ONFI patients include: sleepiness; drooling; constipation; cough; pain with urination; fever; acting aggressive, being angry or violent; difficulty sleeping; slurred speech; tiredness; and problems with breathing.
For more information, please see the accompanying full Prescribing Information and Medication Guide.

When I opened the email, I was in a mood -- one of those moods -- and it just struck me as funny -- an insane, bitter kind of funny -- that the mother and her child looked so damn happy about these new scored tablets. I immediately thought of my friend Erika whose daughter has recently been put on Onfi (and who also had some trouble getting it covered), so I forwarded it to her immediately not because it was useful information that might be of benefit to her, but because I knew she'd immediately think it was funny -- an insane, bitter kind of funny -- just like me. I wrote 

 Good news! I got this in my email inbox this morning, and it really brightened my day, especially the photo of the child playing with his or her mom! There's nothing like a scored Onfi tablet to make family life easier!

Erika replied:

Thank you, Onfi! And you have to be a Debbie Downer to care about those side-effects when you can so easily break these tablets in half! 

God, I love my friends. (And I know some of you reading think I'm terribly uncharitable and that I should be grateful for something here, but now's not the time and I'd rather stick an ice-pick through my eyeballs than be grateful to a pharmaceutical company).

The snail mail was a tidy envelope sent by the Department of Social Services and concerns our recent application for Social Security Benefits for Sophie. As you might remember, this process went a whole lot smoother than I had imagined, and I guess I sort of thought that the whole thing was complete (Sophie is getting a check each month), but evidently, there is still some necessary information that the government needs in its determination. Here is what the letter says:

Your claim for disability benefits under the Social Security Act has been reviewed and more information is needed about your condition. Therefore, it is necessary that you be examined, at NO COST TO YOU, by:
(they list the address of a medical clinic here)

An appointment has been scheduled for you on 09/09/2013 at 11:00 AM for a NEUROLOGICAL exam. Our agency will pay only for the authorized examination or test and for certain related travel expenses.

First of all, I did not put the word NEUROLOGICAL in bold type. They did. I found that hysterical because I'm weird like that.


I am of course wondering why we have to go through this NEUROLOGICAL exam since we already appeared in person and the woman who did our intake confided in me that Sophie would certainly qualify even if I hadn't brought her in person because of the extent of her medical records. I am of course wondering whether some people might go so far as to fake a disability as serious as Sophie's in order to get that million dollars a month from the government (and then roll the wheelchair down the ramp and jump into their Cadillac before roaring off). I even wondered whether this NEUROLOGICAL exam is being ordered so that someone somewhere has a job to do.



I guess on the ninth of September, I'll be keeping Sophie home from school to get her NEUROLOGICAL exam so that the government doctors can confirm that she is, indeed, disabled.

Reader, what are you laughing insanely and bitterly at today?



  1. I am laughing insanely at the fact that an elder cannot qualify for certain home and health care services until that elder is absolutely incapacitated and incapable of filling out the mountains of paperwork for themselves and they better have someone in their corner who is like a pitt bull with a clenched jaw determined to figure out the legal mumbo jumbo and the insanely ridiculous challenges to the fact that their bedridden elder cannot in fact get up and fix her own meals and bathe herself because, well, she cannot even turn herself over in bed so yes she's going to need round the clock care and then you have to go through this every single year from August to December, back and forth, meeting after meeting in fluorescent lit agencies, replacing lost paperwork three or four times, crisscrossing the city to get doctors to fill out the same paperwork again and again, and then you wait till they finally approve your elder's recertification request in July so that you can start the process all over again in August. Thats what I'm laughing insanely and bitterly at today.

  2. You and Angella (and countless others) have my whole-hearted sympathy. I've been there with friends and with my mother. It's all so ridiculous and absurd and such a waste of time and money on everyone's part.
    And the advertisements for drugs are enough to make you think seriously about becoming a Christian Scientist. No, I personally don't think that prayer heals diseases or broken limbs or, well, anything but at least there are no side effects.
    And are the makers of Onfi not aware that for about $1.29 you can buy a pill splitter at the drug store? Hell, I got mine at the GROCERY store.
    Fuck them.

  3. I laughed immediately at the photo too. And now I am so furious that I want to go mop my floors and in Rebeccaland that's pretty g.d. furious. I laugh insanely all the time because I'm insane and that's just how I roll. It's just another good reason to STAY IN THE HOUSE.

  4. Orthodontists who quite possibly do more harm than good, (and get paid a bundle to do it) and other new orthodontists who think breaking a child's jaw is a reasonable form of treatment for a child with an anxiety disorder, (and openly and breezily discuss this option in front of said child).

  5. Jeez. My sister had to prove she was deaf every single year in order to get SSI benefits, and all other 'benefits' of her disability. And today I'm hoping my ex has to prove he continues to be a crazy jerk.

  6. im laughing at this post :)! what do we have if we don't have our sense of humor... twisted and dark as it may sometimes be :)!!

  7. I'm laughing that the behavioral/developmental pediatrician asked me, with a straight face, "Have you given any thoughts as to what Wil will do when he finishes high school?"

  8. You have no idea how many times your insane, bitter kind of funny humor sustained me in that insanely uncomfortable, claustrophobic PICU parent's lounge.

  9. Remembering a similarly ordered exam in what must have once been a bus station in Eagle Rock, tucked in with a donut shop, laundromat and convenience/liquor store in a strip mall. The EKG was conducted in the supply closet, which didn't even have a door, on my son who had survived myocarditis. We laughed darkly that day.

  10. One of my coworkers used to say all the time, "You got to laugh to keep from cryin'."

    It might be one of the most useful expressions I've ever heard.

  11. It is situations exactly like this that make me question the meaning of the word "disabled"?

  12. I am laughing bitterly at the fact that I could easily get the kind of pot that spikes my seizures in the next half hour from Brian, the dude down the hall in my dorm that my friends and I have affectionately nicknamed "Salty Jesus," due to his hair's continual beach-swept, biblical appearance. But after more than 10 medications, a diet and brain surgery, I can't legally get the marijuana that could help my epilepsy. All hail the American medical system.

  13. That I not only live in crazy town but that I may be its Mayor.

  14. I love that picture of Ellen Burstyn. Oy.



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