Monday, April 27, 2015

Accumulation, my Nemesis.

Have you ever felt like you wanted to scream, and no sound comes out of your mouth? You want to have a big cry and no tears are shed, you want to throw your ginormous pile of medical files on the floor and then in slow motion you see it but, nothing happens.
That's how I am feeling.

I get a $569.86 copay for Zoé's sleep study (the bill is only $8,521) and then, before I pay I request the results. Well, in this country (or perhaps it is the case everywhere), in order to know whether you are healthy or dying, you have to go through Medical Records, oh and they tell you how to access the paperwork to request for the results!!! on their website!!!!!
I am freaking out, there is no other word.

Sometimes, I wish it were one big nightmare, no this is not possible, this monster who came into our life. We live with it, we wake up with it and we got to bed with it. His name is Steinert, sounds better than the MMD acronym...Mr. Steinert, the effing (F&^%(*#), excuse my French , hahaha!, beast that came into our life like an insidious predator, to freak me out, to stress me out, and who relentlessly adds to my daily load, like one big truck coming full speed behind me, but the breaks are not working, you get the picture?

Sorry it is one of those mornings. The sun is bright and shining, and I need to do paperwork, pay bills, call for medical records, call for approvals from the insurance company, find the form I filed god knows where at midnight the night before...and then of course, after going through the pile, laying there, the prized paper with the diagnoses...ahhhh thank goodness.

No, but seriously, when is this going to end, or is there no end in sight?

Actually, I can answer my own rhetorical question. There is no answer, because there is no end.

hum.... I take a breather, but this one big thing, my newfound friend.  I like to call her Accumulation, she drags you down, she has this way of going about your day, hiding into corners, and then she pops out just like that, like a Jack in the box, you know the broken toy, you try to stuff that Jack into the box, but just when you feel you have closed the lid, Pop! He shows up. That's my friend. Accumulation.  I hate you! There, I said it, and Mr. Steinert, I despise you!
I feel good, I had to say it and now it's done. I can stop typing, post my entry and go back to my terrifying boring morning duties, but I will feel empowered when I go on the Medical records, website...

Have a good day! oh, and HAPPY Monday!

Thursday, April 16, 2015

Wake-up Call

Wake-up call, I fell asleep at te wheel.

How scary is that? Falling asleep at the wheel.  I have to write it twice for it to sink in...

I have been driving Zoé around for the past 7 years. Ever since the first month of life, we've been running through Manhattan , from the West Side to the East Side, from Uptown to Downtown, from the Upper West side to Central Park South, from Piedmont to San Francisco, from Oakland to San Mateo, from the East Bay to Sacramento.  And as far as Salt Lake City!

I just collapsed with fatigue.
Thank goodness I wasn't driving too fast, it was the exhaustion added to the heat, the AC and radio being off, both windows being open, that caused the narcolepsy to kick in.

One more checkmark on my Registry Form, where every year they assess the changes.
Last year, I was fine, this year, well, daytime sleepiness has increased dramatically.  My favorite waiting rooms are those with comfy couches where I can doze off while Zoé is working. I fall asleep while in music therapy, lulled by the piano and the songs.

Physically, the legs are skinnier, the energy level has decreased, ziplock and bottles are nearly impossible to open.  My neck is now in pain and I sleep with a heating pad at night, to alleviate the discomfort.  But I try not to dwell on it, the show must go on.
I need to keep up for David and Zoé.

That being said, I have decided to QUIT one therapy session for Zoé. Communication Works, which at first was a good idea. It would enable Zoé to learn how to behave with peers, how to interact and learn to be more flexible, to help on the aspect of perspective taking....but clever Zoé found that CW was another arena for her to perform, playing a game, increasing the pretend play, where everyday she would come in and say: "I am in the red zone today" (Meaning angry, frustrated). I applaud the language usage, but I know very well that she didn't mean it and that it was all a game...

So that's that. No more back to back therapies on Wednesdays. Our last class is in 2 weeks and after that we can take a breather before hitting the road for horse therapy 30 minutes away (Which now takes me an hour).

For Zoé falls are recurrent and I monitor them daily, about 2 or 3.
I always need to hold her hand even though she wants to show her independence... I cherish these moments when we walk to school in the morning and laugh or talk about her day.

Reading is now quite good, not as fluent as it should be, but it is coming along.
Math skills need work and so we've set up a little system and progress chart with stickers and stars.

Voila for now dear readers. Zoé and I are heading out of town tomorrow, with our BFFs, for our bi-annual all girls road trip.

Staying at a resort overlooking the Pacific, with pool, jacuzzi, beach camp fire.
It will be so delightful to relax and enjoy each other's company.

I will be sure to post some pictures.

Until then, enjoy the gorgeous spring time wherever you are.

With fondness,