Tuesday, January 16, 2018

Still Afraid After All These Years.....

Babygirl and I are sitting in the waiting room in CHOP Nephrology.  We got here at 7:30 with the goal of being the first patients in the clinic, hopefully with the outcome of being the first patients OUT of the clinic.  Our appointment was originally scheduled for yesterday, but we got a call a couple of weeks ago telling us that the clinic was closed for Martin Luther King Jr day.  Could we come in a day later? 

Well.  I already had taken off from work for Monday and Tuesday so that I could get her to Nephrology on Monday and Neurology on Tuesday. And we'd been lucky enough to snag a 10 AM appointment with Neurology so we'd be able to start home before noon.  So, what's the problem?

Nephrology clinic is a morining clinic, first-come-first-served, and they've just dumped two days' worth of kids into one days' worth of clinic.  It's gonna be a madhouse.

And Neurology is in another city, 24 miles away, and if we get the best possible timing we will be negotiating the larger of those two cities at peak rush hour. 

Just shoot me.

But it's either that or travel 400 miles twice in one week in the month of January, and, lordy, given our today-it's-spring and yesterday-we-got-8"-of-unpredicted-snow type weather, THAT is something devoutly to be avoided. 

So here we are, gassed up and ready to run like lunatics to the parking garage as soon as they turn us loose.

Packing for these trips still tells me something about my interior world. 

It's been more than 4 years since the last time Babygirls was hospitalized.  It's nearly SIX years since the transplant.  It's approaching 7 years since the last time I believed I had gotten my sickest kids through their worst health crises, and that we were all good. 

I packed, for a simple overnight:  Two pairs of jammie pants, two full changes of clothing, a spare sports bra, a pair of sandals (because you need something quick to put on your feet if you're running for coffee at 2 AM in the hospital.....). Wait. Whoa.

We did Babygirl's blood work LAST WEEK here at home, and I'm assuming that if there was a crisis brewing somebody would have called us and made us come in. 

But I can't overcome it:  The superstitious belief that if I am Just Prepared Enough that everything will be okay, that Babygirl herself will be Okay, when I know that ship sailed and sank in April of 2011.                                                                                                                                                                     
I really need to grow up.  Babygirl certainly has.


Sunday, December 31, 2017

The Sunny and Boo Show...

Lest I leave this year with all of you thinking that our lives are only sadness and disaster, let me give you one episode of the Sunny and Boo show:

Driving past the hospital this morning with the grandkids in the car, Sunny piped up (as she always does), "That MY doctor office!!"

I can understand why she thinks so. Between the frequent bellyaches that turned out to be due to chronic constipation and, more recently, a substantial head contusion, she's seen the inside of the ER more than her siblings, although they are frequently with her when she goes. 

Then elder sister Boo piped up. "Yeah, that's where they had to take your head off and sew it back on.  It's JUST. NOT. FAIR.  I NEVER get bumps on MY head!!!"

Now, mind you, it's snowing to near whiteout conditions and the roads are pretty rough, and now I'm laughing so hard I can't see anyway, so what difference does THAT make, I ask you?

It's utterly amazing that I simply don't drive off the road, and no great wonder that my mom did, once, just from laughing. Grandkids are the most hysterical form of stress relief there is.

Happy New Year to all of you, from all of us!


Saturday, December 30, 2017

Uninsured Since 2016.....

We have what is known as "commercial insurance." We are not old enough, disabled enough, or poor enough to qualify for any government-sponsored health care.  We are fortunate that my employer pays the lion's share of our health insurance policy cost, but to keep that cost down, we have been given an ever-growing portion of the usage costs in terms of co-payments and deductables.

We do what we can to keep costs down. 

We go to in-network providers as much as is humanly possible.  We are more than willing to use generic medications when there is a generic medication available. We avoid the emergency room in favor of lower-cost walk-ins when appropriate.  Because we don't have government insurance we are allowed to use manufacturer's discounts on all of our brand-name medications, and we also try to stick to what our insurance prefers (if we can figure it out!).

But Babygirl's not a cheap date, medically speaking.  And she's not having a great winter. She caught a cold about a month ago, and it triggered her asthma.  We started her inhalers right up (we refilled one 5 days ago - that's important to remember later in this story!), but the cough has just gotten to the point where it is merciless.  And the beauty of a good asthma cough is that it is a dusk-to-dawn affair.  For someone with migraines, a sleepless night of violent coughing is just BEGGING for a headache.  And Babygirl never has to BEG for a headache, they just come in and make themselves right at home anyway.

(Prior to this, the headaches had, in and of themselves, been severe enough that we'd contemplated a visit to the ER at least once.  She's said a couple of times, "It's like I never had the Botox this time.")

So this morning I logged at 8 in and was told to report to the walk-in at 11.  We ran a couple of errands and arrived at 10:30 since our walk-in is rarely busy.  THAT was an error in judgement. They are suffering through the same new computer programming we are, and the bad roads made one of the doctors late.  We were roomed about 1 o'clock. The doc looked her over, opted for increasing her steroids and starting some nebulizer medication, avoiding unneeded antibiotics and x-rays.  I helped by showing her shortcuts in the system to make her workflow more efficient. I've been suffering with it longer than she in my office, no need to make myself suffer excessively off the job as well, right?  She sent the new prescriptions off the the pharmacy, where I already had a couple of things waiting for me.

We stopped on the way there to eat lunch, do the weekly grocery shopping, and to get wrapping paper for next year (Hey! We're all out - don't judge! LOL). 

Somewhere along the way the pharmacy called and asked if we'd gotten new insurance cards recently.  We had, actually, about a week ago, but they don't take effect until after the first of the year, so....why?

They had tried to submit her new prescriptions and had been told, "Oh, she hasn't had coverage since 2016!"  The pharmacist pointed out that Babygirl has been getting prescriptions filled QUITE regularly throughout ALL of 2017 up to and including (you guessed it!) FIVE DAYS AGO so what, exactly, are you talking about??

By the time we arrived at the pharmacy she'd already been on the phone for over 45 minutes with some high-school-educated gum-chewing gatekeeping flunky who clearly thought that SHE knew more about the matter than the pharmacist did. The pharmacist, who is apparently a candidate for sainthood, was doing her best to find someone farther up the pharmaceutical food chain.  On a Saturday.  On New Year's Eve Eve. At nearly (by this time) 5 freaking P.M.

At this point, what we really need to make Babygirl feel better is $3 worth of prednisone and probably less that $50 worth of nebulizer medication, so I'm ready to fork out the cash and let the refill on her antirejection medication and inhalers go for now - we have enough to get us through the weekend and we can take up the fight next week.  Next Year.

Crap.  Who the hell knows what that stuff's going to cost us next year?  January is always mystery month, and I always keep $1000 on hand for just medications in January just in case, but DAMN, I have coupons for those inhalers and I KNOW I can get them for $30/3 months if I can get them NOW and they'll last until April and she won't have another asthma attack until 2019 so I won't need them again and......freak.  I need to breathe.

So I take off my jacket and climb the lobby stairs a couple of times, go to the ladies' room and splash cold water on my face (and because I'm feeling like an irritable asshole I raise the blind in the handicap stall window.  Who puts a window in a first-floor bathroom?? I feel a little bad now because if some short wheelchair-bound soul goes in there they will NOT be able to reach that sucker. My bad.) and work off some steam and figure that if the pharmacist is willing to waste her day talking to idiots on my behalf, the least I can do is pretend to be patient while she does it.

"At least we aren't almost out of her transplant meds."  "That will NEVER happen while I am Pharmacist here."  Damn.  I think I saw her Cape and Tights peep out. 

An hour and a half later, she learns that despite the fact that they have been billing (and getting paid for) Babygirl's medication using a code listing her as person #2 on the insurance card, she is, actually (this week at least) person #4 and should be coded as such. Just like the inexplicable change in mail-order costs a couple of months ago, "It's always been that way" was the only (utterly nonsensical) explanation the insurance company could offer. $114 for her medications (and $75 more for three of mine) and we were out the door.

Babygirl looked at me at this point and said, "I'm really glad I don't have to do this on my own."  I felt my own Cape flutter a little. (I shoulda maybe hung it over that bathroom window....)

She just filled her pill sorters while doing a breathing treatment, adjusting the higher dose of prednisone for her lower one for the next four days, and asking, "Are my hands supposed to be shaking like this?"

Yup.  Just like my brain is right now.


Wednesday, December 27, 2017

Christmas Plumbing....

My house has been Holiday Central for many years.  It's big enough, and has a big table. We had the most kids, and it made sense for people to come here:  That way they could leave the chaos behind any time it got overwhelming.

Wanting to get some idea of exactly HOW overwhelming, I posted this on Facebook:

"I failed to send out the engraved invitations at Thanksgiving...So here are the Christmas Invites:
December 23rd will be kids' day. Come over any time after 1 PM for cookie baking. Make a gift for Mom and Dad if you need one! Dinner will be Lasagna (in honor of Great Grandma's birthday!) at 5 PM, with cookie decorating to follow. Adult beverages available..
December 24th: 
11 AM church service includes a kid's program (come and watch Boo and Sunny!) and a Cantata.
Dinner (adults only*PM me if you think you or your kid should be an exception LOL I may agree) at 5 PM. Adult beverages available 8-10 PM
Services at 7 and 11 PM, I'll be singing for both.
December 25th:
Gifts opening at 9 AM for those "sisters" who can't be apart for the event LOL. Quiet time at grandmas house noon to 4 PM.
Dinner at 6: Roast beef, mashed potatoes and whatever you all are bringing (let me know so I can fill in the gaps!).
RSVP! or just show up for the cookies!"

You get the idea.

The 23rd was delightfully chaotic.  There were 6 grandkids and four sisters, lots of flour and frosting and some early gifting, and a LOT of sugar buzz.

Christmas Eve was sweet.  Seeing little children in sheep costumes escape their shepherds and crash the bell concert during the morning service:  Priceless.  The two evening services, lovely.  

The quiet time between?  Well.

Sometime during the Cookie Crazy the downstairs bathroom sink stopped draining.  My granddaughters are notorious for putting things in pipes that JUST. DON'T. BELONG.  So, on my list of things for between noon and 5 PM (in addition to making dinner and making sure our ice and Adult Beverage supplies were adequate) I had a sink to unstop.

Overnight Drano had not solved the problem.

I figured out how to pull the vanity drawers, and got down to removing the trap.  No clog.

I tried the 'twist and lift' that usually removes the plug device from it's anchor, and the plug.....sank into the drain.  Pushing the drain lift did not make it move. 

Up to this point I'd managed without hubby, but I called him in for a consult.  He's a genius - he handed me a pencil, which was long enough and narrow enough to push the plug back up.  The clog was entirely on the plug, but the device that moves the plug up and down was broken.  Well, honestly, how often do you actually need to plug your sink anyway?  I put it all back together without the plug, after cleaning a LOT of nasty, mentally apologizing to my granddaughters for blaming them for the problem.

The Holidays proceded apace, and a good time was had by all.

Christmas Night, when all the guests had departed, Hubby and I played a new Christmas game, finished a bottle of wine, and went to bed.  

About 3 AM MY plumbing went crazy.

My gut hurt all the way through my ribs to my mid-back. Being sick was a brief, blessed relief.  The word "pancreatitis" flashed through my head a couple of times before the pain let up after about an hour.  Well, not 'let up' so much as 'spread out all over my body.'

I am not terribly susceptible to stomach bugs, although the past two years might argue differently. 

But I AM a baby about being in pain.  I took some Tylenol (the only over-the-counter painkiller my kidneys will tolerate).  I felt better.  Well, then, this sure-as-crap isn't pancratitis - NOTHING makes that feel better. 

I called in sick to work, and slept 12 hours between 'plumbing emergencies' for the rest of the day.  I worked half a day today.

I suspected it was handling whatever was in that damned drain, but then I discovered that about 1/3 of the family had it (and hubby and Sunny just got over it) so who knows.  

But if you are going to get sick, get sick the day AFTER a great long weekend, right?


Thursday, November 30, 2017

Joyous Moments....

It's been an undisciplined gratitude month.  Oh, I've been grateful, every day, truly.  But I've been lax about getting it down on paper.  But the month has been full of those odd, funny, joyful moments...

The laughter of a child at a made-up nonsensical joke.

Getting the giggles so bad you forget what you were laughing about to begin with and laugh more because you are laughing until it hurts, and then you laugh more.

Meeting the eye of your love across the room and smiling because you both just Know.

Coming through the door and smelling dinner when you thought you'd be the one cooking.

And watching a big, clumsy old dog take off across someone's yard to attack a spinning pinwheel flower, and seeing him laugh and prance away like he did something AMAZING when it stops spinning.

Our lives are full of things to laugh about, if we pay attention.  There are moments of joy, quiet and loud, dark and bright:  They surround us at all times if we have the eyes to see and the ears to hear.  The day-to-day struggles of our lives sometimes feel overwhelming.  I need to remember to SEE, to HEAR, and to FEEL the joy when it is struggling to make itself heard!


Tuesday, November 21, 2017

Cherries and Maple Leaves.....

It was about this time, two years ago, that Mom took the fall that ultimately took her home. There's a two month blog-gap between the first December  (General Health Updates....) and my annual kidney transplant update post (Four Years....) that was utterly taken up by her hip fracture, hospital stay, nursing home transfer and decline.  (By the way, my brother offered the nickname "BamBam" for JuJu's baby - it never stuck - they all call him Bubbies. I have no idea why.)

Time passes.  The raw emotions that follow the loss of both of your parents (and one of your best friends) in less than a year don't really go away, exactly.  They just hit less frequently.

Sunday afternoon I wrapped Christmas presents.  Don't judge me - there are a lot of grandkids to keep track of!  I'm pretty efficient.  Wrap, label, add to the list.  Wrap, label, add to the list.  Wrap....

My dad adored chocolate covered cherries.  I'm not sure why - personally I think they're pretty gross - but he loved them.  So every year, I would buy him a box.  Once, when Curlygirl was very little, she started eating his cherries before he could even get the first one:  I had no idea she like them.

So, every year for nearly 20 years after that, I bought and wrapped TWO boxes of chocolate covered cherries.  Until last year.  I don't actually remember if I bought them for Curlygirl then, but I bought them this year.  And wrapping only one box just made me cry for a few minutes.

Next day: 

First, the background.  When Citygirl moved out west to learn wine making, she sent my Mom a picture of herself holding the biggest autumn maple leaf I've ever seen - far bigger than her head. That picture sat on my Mom's dining room table, and she commented on it at least once a week over breakfast.  The photo went with her to the nursing home, although she was too out of it to really notice at that point. I remember picking it up with Mom's 'personal effects' a few weeks after she died.

So, walking into work, still a bit tender from the Christmas memories, I spotted an absolutely enormous maple leaf on the sidewalk, not as big as the one in the picture but monstrous compared to what we usually see on trees here, and, BLAM, I was sitting at Mom's table, sorting pills and drinking coffee while she ate her peanut butter toast and chatted about whatever thoughts were wandering through her mind at the moment.

Weeping as you come through the door of the office is bad form.

Grief is a funny thing.  You can be fine - truly FINE - and then. Then.

Oddly, someone today randomly mentioned that I seemed to be handling my Mom's loss well. He's facing losing his own mother and isn't at all sure he'll do well. It left me at a bit of a loss as to what to say.

There's no real point to all of this, and it's a bit out of place in the gratitude month concept, except...I'm not UNgrateful for grief, truly.  I've met people who would happily dance on the graves of their parents, and who grieve only for the sadness that was their childhoods.  The things I miss are happy things, good things, grateful things. My life hasn't been all sunlight and roses, but my parents did their best to give me better than they had, and I miss them.


Saturday, November 11, 2017

Grocery Stores....

Today was stock-up-on-everything day.  Beginning at the Farmer's Market, moving through Aldi's, Walmart and Price Chopper (in order of ascending price LOL), there was really nothing that we could have wished for that we couldn't have found.

Of course, our wishes are modest.  We aren't looking for fresh truffles and two carat diamonds.

But we could have had live lobster.  We bought mangoes and pomegranates. We could have had any of an almost unimaginably large number of luxuries without driving more than five miles from home.

I remember life in Pakistan.  I lived in a wealthy neighborhood (lower upper class, if you will). The family had one full-time servant, and at least three part-time.  We could afford to but enough water to have a flower garden and a lawn in the middle of our desert city.  There was a refrigerator, and we fired up the hot water tank every morning for (brief!) hot showers, saving the grey water for the lawn. But shopping?

Once a week a bazaar sprang up in a dusty grassless field.  There were a lot of things you could buy: Clothing, undergarments, cloth, towels.  There was food also:  Garlic, spices, two or three types of fresh vegetables, some canned goods. Fresh yogurt in large open clay bowls. Fresh chicken as well. Well, actually, LIVE chickens that were slaughtered and plucked on site while you shopped. Nothing like flying feathers to help you work up an appetite....

The entire place was a transplant recipient's nightmare.

Farmer's market food requires a couple of extra minutes of preparation.  Cut the tops off the carrots.  Snap the Brussel sprouts off the stem.  Make sure you didn't bring home any little green worms with the broccoli.  But even our most inconvenient food is easier to work with and far more plentiful than what the majority of people all around the world deal with day-to-day.

I'm grateful.