How to Keep Sane During Phone Calls Related to "The Systems of Care"

 A dear online friend mentioned my "fuck you stare" yesterday, which I was completely unaware that I possess. Another dear online friend private messaged me that I did not possess a "fuck you stare" but had "beautiful black eyes" and "the weight of the world." She also told me that I had plenty of "fuck you" writing. I sent the former the photo above and the latter a message saying that the former meant no harm and that lately a "fuck you" stare at men in general was very much in order. I'm talking about YOU, John McCain and that clot behind your eye that you're dealing with by using the "best healthcare system in the world" that we provide for you, and YOU, Mitch McConnell and your bullshit healthcare bill that you've deferred yet again. The weight I carry, though, is far less than others' in this world, and I'm not talking poundage. I'm thinking we should all join together, find a good ambulance-chaser attorney and file suit for emotional distress related to the healthcare shenanigans in our congress.

This morning, I spent the better part of two hours on the phone using my tiny little mother mind™ to navigate the various Systems of Care. That's a euphemistic phrase for The Neurologist's Office, The MediCal, The Blue Shield, the Social Security Administration, and the Wheelchair Company. With the exception of a successful refill for The Drug That Doesn't Work But That Sophie Is Horribly Addicted To, the rest of the calls were unproductive fools' errands. I've been throwing around the term fool's errand a lot lately. It captures quite perfectly what dealing with the Systems of Care is like on some days. Most days. I won't regale you with details because I'd feel responsible if you felt violent as a result, and I don't have a way to dispense Tootsie Roll pops to mitigate any damages.

Anyhoo.

Today, I found myself unwrapping a Tootsie Roll pop and sucking it furiously while on hold. About when the insurance company's Automaton/human came on, I'd gotten to the sticky tootsie roll part and enthusiastically crunched the candy into the chocolate while dictating social security numbers and case numbers and weight and marital status and my feelings about John McCain's eye clot.* Just kidding on the last three. See below for thoughts on the last. Where I ended up after said conversations was Brazil,** where I was given a list of different numbers to call for seemingly intractable problems and issues. I placed those numbers in a little pile on the hot pink plastic file bin on the top of my desk, right under the Shrine of Doodads and Tchotchkes.

The Tootsie Roll pop helped which probably means I have some kind of oral fixation issues.

Actually, it helps to curb invective so I can work on my "fuck you stare."

What also helps is to surrender and call it a day even though it's before noon.

What are ya'll doing today?












* I know I'm not alone in remarking on the irony of the estimable Senator McCain who suffers from a clot above his eye and who is currently getting excellent (The Greatest Healthcare System on the Planet) healthcare, gratis (thanks to his bosses, US), which has pushed the "healthcare" vote off yet again (because his vote is said to be a resounding YES). Imagine my "fuck you stare" here.

** I can still conjure the feeling I had after seeing the movie Brazil, not only because my tiny little mother mind™ has a memory like a steel trap, but because the events of my life mimic them nearly every day.

How Much a Chariot Costs, Apparently

Holy shit.

Cat on a Hot Tin Roof That Jack Built, Part Three***

There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,

I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?

Love, Elizabeth

Dear Joan,

I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.

Love, Elizabeth

Dear Joan,

I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.

Love, Elizabeth

Dear Joan,

I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.

Love, Elizabeth

***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.

DIY EEG

Alley behind Trader Joe's, La Brea

After delivering the lecture to end all lectures about everything I do for you, realizing all the while that when it's over 100 degrees outside, we're all a little irritable and therefore maybe I should just shut up, I ran out of the house and into my sexy Mazda and made a run to Trader Joe's where I bought what they all godd**n needed, and when I was paying, the cashier picked up the dark chocolate bar with hazelnuts and suggested that next time I make a cup of coffee, I should drop in a square of that chocolate and stir it around. Do it yourself, Mocha! he winked and he smiled and I smiled and then I took the alley way home and snapped that photo of a seemingly abandoned wheelchair facing what looked to be an artfully decorated junkyard. For a split heatstroke second I considered lifting it into the back of my car and bringing it home. Velcro straps, I thought, maybe a good cleaning? and then I came to my senses and pulled over only to take a photo, noticed the elephant roaring behind it all, thought about elephants in the middle of rooms, the unbloggable, long memories. Earlier today I was talking to my friend Jenny who asked how the EEG went last week, and I told her that due to the usual clusterfuck of insurance issues, we had to put it off. I was supposed to call the insurance company yesterday and request that they make it an exception and put the provider in-network. I was supposed to call the nice person who read my blog the other day when I talked about this, who happens to work for an EEG company and perhaps could help me. I was supposed to do both those things, but I let Monday pass, given the heat because I just couldn't do it, didn't have the patience or strength.and I let today pass given the heat because I just couldn't do it, didn't have the patience or strength, so I told my friend Jenny that perhaps I should do the EEG myself!  I screamed, A DIY EEG! and we continued to laugh. So, there's plenty of laughter, albeit the heatstroke kind, delirium from being too hot, but not the right kind of hot, elephants in the middle of rooms, wheelchairs in alleys and do-it-yourself EEGs.

Asking for a Winged Chariot

So, about six months or so ago, I began what I knew would be a long process to get a new wheelchair for Sophie. Those of you who know of these things will nod your head and probably don't need to read any further because you probably have post-traumatic stress disorder and what I'm about to write will probably trigger whatever form yours takes. Those of you curious about the small stuff with which we caregivers regularly deal should stick around for pure entertainment. Have I ever told you that it's the small stuff that can actually break you when you've been doing the care-giving thing for nearly twenty years? Along with God never gives you what you can't handle, and Sophie picked you as her mother because she knew how great you are, and There's a place in Heaven for you and a better life after this one, Don't sweat the small stuff is a very irritating adage. Honestly -- I've got the equanimity thing down, for the most part. I actually don't really sweat the big stuff. I can go to bed each and every night with the passing thought that I might find Sophie not breathing in the morning, a victim of SUDEP, and actually sleep just fine. I can watch tens of thousands of seizures and feel like I'm being stabbed in the heart every time but still manage to speak calmly and even negotiate how many Oreo cookies the "regular" children will get after dinner. I've talked to my comrades, and they all agree that sometimes it is the small stuff that makes us sweat.

Anyhoo. (New readers, please note that I despise this expression and reserve its use for posts dripping with sarcasm like this one.)

Sophie needs a new wheelchair. Even though she can walk, she tires easily, needs total assistance while walking and has a form of cerebral palsy that prevents her from walking long distances. Her old wheelchair is ratty and uncomfortable and a tad too small. She needs a new one, in particular, so that she can ride a bus home from school in it and avoid the precarious descent down the stairs of the regular bus which is a lawsuit waiting to happen. I began the process of getting approval for the new wheelchair about six months ago when a very nice woman visited our home and took measurements and helped me to pick out the chair that would work best for Sophie. After that, the trouble began. Sophie has private health insurance (thank you, Obama!) and secondary Medi-Cal, which is supposed to pick up anything that the private health insurance doesn't cover. I don't even know if I'm able to relate here, clearly, how complicated this whole process has become. The order has to be denied by CCS (California Children's Services), which Sophie does NOT have, before Medi-Cal will even review it, and that paperwork has to be filed BEFORE the primary insurance is even consulted. I keep smelling bullshit but not strong enough for me to do my usual smoking bread stick shenanigans (again, new readers -- I have a long history of dealing with insurance companies and pharmaceutical companies, during which I generally am on hold and smoke a bread-stick to calm down. You can go to the search bar on my sidebar and find these posts, if you're so inclined). The Neurologist had to write a letter stating the medical necessity of the wheelchair, but this couldn't be a simple letter. It had to have progress notes and all sorts of folderol, which I'm sure is necessary because of all the MediCal fraud going on and which I'm happy to oblige, but after six months or so, I'm really just sweating and sweating a lot.

You'd think I was requesting a winged chariot.

I'd use some rude curse words, but I don't want to alienate the Powers That Be or mothers or fathers who might be reading here, so I'm going to reserve those words for next year when the whole hideous election cycle gets going, and we'll be subject to the likes of Rand Paul and Sarah P and that guy from New Mexico and all those people who want their country back and want the gays to go back in the closet or the brown children to go back to where they come from and women to keep their legs closed and everyone to pray at school and have the liberty to carry a gun into Target to kill the people who threaten them. Where was I?

Oh, yeah. Sweating the small stuff. In the grand scheme of things, getting a proper wheelchair for Sophie is really not such a big deal, nothing compared to the seizures, the risk of SUDEP, financial distress, the great, black cloud of what we'll be doing when she turns 22 and can no longer go to school. Those big things, though -- I'll deal with them as I've always done. They actually enlarge me in the best way.

The small stuff? The making a medical case for a chariot drawn by winged horses? The process to get a prescription for Onfi changed to the liquid form so that I don't have to use the razor cutter to divide the dose for the next wean (a PTSD trigger for sure)? The going to another IEP to state that Sophie needs a wheelchair bus, not a regular bus but now still a regular bus because the winged chariot is not yet ordered?Not only does it make me sweat, but dealing with the small stuff also has chipped away at nearly everything by which I used to identify myself: being sweet and kind and graceful and yielding. I'm now a point, very, very sharp yet not quite broken.

An Open Letter to Councilman Tom LaBonge and Carolyn Ramsey, Chief of Staff

Dear Mr.LaBonge,

I am writing you this letter in an emotional state and understand quite clearly that writing anything in an emotional state is often not the wisest course of action when one is trying to get something done. However, as a mother of a severely disabled young adult and two active teen-aged boys, I get things done regardless of emotion. Today, for perhaps the hundredth thousandth time, I took my daughter for a stroll up to a neighborhood restaurant on La Brea. We live in the Hancock Park Adj. neighborhood, a neighborhood of near-one hundred year old modest California bungalows housing diverse families, the elderly and, in our case, a disabled nineteen year old.

As you can see in the above photo, taken one block from my house, many of the curbs are NOT cut away to provide access for those using wheelchairs. I have lived in this neighborhood for nearly eighteen years, and on this particular street for fourteen. Curb cuts are random in our neighborhood and have been for years, despite repeated calls and inquiries about getting it done. Is there a method to the madness of how these things are done?

It's one thing to struggle with a stroller and a small child up and down these curbs -- I would say that in that case, it's a convenience to have the cuts. However, maneuvering an 80-pound individual in a 75 pound vehicle up and down, in some cases, an 8-inch curb is near impossible. A person with disabilities in a wheelchair would probably find it impossible to do so. The alternative, which I do regularly, is to walk in the street and just take my chances that the cars in both directions will give me room, that someone parked on the side of the road won't open his car door into my daughter or that the person driving fast in his luxury vehicle won't honk his horn and make an obscene gesture while I do my best to stay out of his way. Get out of the road! he cried, today, as I struggled over potholes and dodged those prickly seedpods that litter the streets this time of year.

Hence, my emotion. I thought, today, that the construction just down the street, the herculean Subway to the Sea Project, will probably happen faster, and we've been told that the work there will be completed in ten years. I sure hope that when I'm nearing sixty years old and can hop a train at the end of my street to ride to the beach that I'll be able to get my near-thirty year old daughter there, too.

Please, Mr. LaBonge, get it done. Get the dang curb cuts put in throughout the neighborhood, not just randomly (particularly in the -- ahem -- richer parts of the neighborhood, where I've noted they have been completed for years).

Please, get it done.

Respectfully, your constituent who voted for you,

Elizabeth Aquino
Los Angeles

Wheelchairs and robotics nearly bring tears to my eyes

Watch this video!