Sunday, April 27, 2014

Post 500.....

Three years, five hundred posts, fifty-five thousand pageviews. 

A sick kid, a kidney transplant, a dying car, new grandchildren.  Surviving being sandwiched among four generations of family.  Storms, floods, remodeling.  Laundry, housekeeping, vacations.  Special education, opera, making wishes and Paris.  Surgery, sadness, fear and despair.  Hope, happiness, silliness and games. 

Three years is a long time.  It's nearly a quarter of Babygirl's life.  It's almost half of the life she can remember.  Maybe that is why she has adjusted better to it all than I have.  I have vivid memories of 'normal' that she hasn't got, and despite three solid years of experience to the contrary, I keep mentally expecting to wake up and discover that things have gone back.  She's over that.  She might hate some parts of her life as they are, and she still fights daily to feel better, but she doesn't do it expecting or even hoping that things will magically change.  She has more peace about it than I do, or at least it seems that way. 

It is in my nature to fight to change things.  There is always at the back of my mind a plan for making things better, easier, less of a struggle, and there always has been.  From crazy schemes to make my parents like each other better to going to medical school so I could keep working on that cancer cure to caring for the poor and underserved, there has always been an interior script, a narration in my head, something that I see and want to make real.  With Babygirl I've lost the thread of that story.  Truth be told, I've lost the thread of the story for all my kids, but with the older ones it's because they've taken it into their own hands and are making their own lives, which is as it should be.  It feels right.  But it doesn't seem right with Babygirl.  It seems too soon to let her take her life into her own hands and work out her story, but being sick grows a kid up.  She may be 14, and sometimes she's REALLY 14, but the real story is that she's never going to be like any other kid at school.  She's been pushed into maturity.  She's scripting her own life and doesn't need me as co-author.

I started this blog to tell our story.  I hoped if enough people saw it we might get a kidney from a living donor.  I thought that that was the key to "happily ever after."  Now, the blog is my story.  Babygirl is not a child anymore, and she'll tell her own story in due time. 


Thursday, April 24, 2014

Early Morning Meetings.....

Thursday is my 'late day' at work. I start seeing patients at ten, and finish at six, giving a handful of patients weekly the opportunity to be seen a little bit 'after hours'.  It's a tough day - lunch happens after I've seen about four people and the afternoon is eternal.  But one thing that makes it more than worthwhile (aside from giving people access to care who might not be able to leave work for it) is that I get a morning to sleep in, handle some household chores, make phone calls.  Those two hours are incredibly productive, or delightfully de-stressing, depending. 


Today I have a mandatory meeting at work at 7:15 AM.  I'll be working from that time until at least 7 PM.

I'm going to go have another cup of coffee.


Wednesday, April 23, 2014


Last evening, Hubby made strawberry shortcake. 

Cooking for Babygirl, given her post-transplant immunosuppression, means that you have to follow different rules.  Strawberries are a no-no don't-touch you-can-NEVER-eat-it food.  Even at their freshest they carry dangerous mold - well, dangerous if you have no functioning immune system.  Making strawberry shortcake, like making a salad, is an act of loving devotion.

Hubby went to the store and looked for containers of strawberries with no visible rot or blemishes.  Sometimes this is simple:  You look at the first four containers, they all look faded, and you walk away.  If you REALLY want strawberries, it takes longer.  I usually reject at least five containers of strawberries before I find even one that passes visual inspection.  It requires a thick skin, since there are usually other people wanting to get into the space you are occupying. And once you have your berries, you have to use them right away.  

The rules are simple:  soap and warm water washes to the outside of any raw product that Babygirl intends to eat, including lettuce.  But grapes, blueberries and strawberries have surfaces or stem holes that can allow germs deeper entry into the fruit, so even that level of clean is considered inadequate. Cut off the tops of the berries, wash with soap and water, and then:  Cook 'em.  This is truly horrible with grapes, and although blueberries and strawberries cook well, it doesn't leave you with the taste of fresh fruit.  So we've figured out how to rapidly blanch strawberries.  It's a compromise.  I'm sure the interior of the fruit doesn't reach germ-killing temperatures, but the surface certainly hits the required "steaming hot" level.  We then rapidly chill them in the freezer and then cut them, add sugar, and Voila!  The process takes a bit of time and patience, two commodities that are in general short supply here. is impossible to be unhappy while you are eating strawberry shortcake.  It is one of the happiest foods there is.   I remember, as a child, that once a year in strawberry season my mom served strawberry shortcake for dinner. Not dessert:  Dinner.  What could be happier than THAT? 

Happiness isn't always something that just happens.  Happiness requires dedication, devotion, discipline and an open heart: The ability to look for an excuse for a celebration.  The gift of setting aside stress and being in the moment.  The joy of family.

Life, in the end, is lived moment by moment.  Last night was strawberry shortcake good.


Tuesday, April 22, 2014

Y4-W1 The Start of the Fourth.....

Three years ago yesterday our world flipped.  It refuses to flip back. 

Today we begin year four.  Babygirl has felt like crap for 2 days.  Thankfully there was no school yesterday, so she only missed today.  At dinner she said something to the effect that her body felt better - an odd way to put it - and that it is a relief to feel that way.

I'm sure it is.  But, ugh.


Sunday, April 13, 2014

Batting 125......

At our last appointment with nephrology we were asked to do a number of things:  Set up counseling for Babygirl to explore and treat her anxiety.  Set up a gyn appointment to evaluate the menstrual irregularities and pain.  Set up a six week follow up with nephrology.  Set up follow-up with neurology. Babygirl and I are also overdue for appointments with the family doc and the dentist. Eight appointments, total.

What with all the work insanity and the increase in my headaches, I have had very, very little time (and even less energy and no residual organizational oomph) to get all of this done. 

Babygirl began counseling this week.  Hubby took her, since available appointments landed during work hours (and since I'm in the office eleven hours a day, that's pretty much all the time, right?).  I had spoken with the counselor when I scheduled the appointment and filled her in on the problems.  Hubby filled in gaps as best he could.  And Babygirl actually talked, which is very good.  She has a follow-up appointment for this week to see the counselor alone.

Hubby shared a funny moment:  As Babygirl was describing her headaches to the counselor, the counselor looked at Hubby and said, "That sounds like migraine!  Has she been checked for this?"  How he kept from laughing out loud I have not one clue.  "Yes, she has.  And yes, it is."

I haven't called the local doc or the dentist. I have managed to get an appointment with a gynecologist for Babygirl. I'm hoping to fit neurology in there somewhere at the same time (I have a message in to the scheduling coordinator); and then at nephrology (they are the most flexible).  I'll be two weeks later than I was supposed to be at nephrology, but.....somehow nothing feels as urgent as it used to. 

The first year after Babygirl was diagnosed, our compliance batting average was 950.  We did everything in our power to do every single thing we were supposed to do to keep her healthy and on-track.  The second year (and most of the third) I'd say we were still batting over 900 (how in the name of ALL that's holy did I forget to get her a flu shot???). This past month?  If my compliance with scheduling is at all representative, we are batting 125.  That's more than enough to send us from the Parenting Big League to a Little League team.

This lack of urgency, I realize, is not a good attitude on my part.  I have, essentially, scheduled only two of eight appointments required of us at our visit, all of which were to be accomplished by 10 days from now, and only one of which will have been managed in that time frame. I ran out of meds and needed an emergency supply.  I've not been agressive about making Babygirl go to school daily.

I have a list.  My list has a list.  I'm just not looking at it enough.  And I don't care.


Wednesday, April 9, 2014

Brain Fog.....

Running for your life through thick mud. Stirring bread dough.  Struggling to breathe through crashing waves.  Attempting to understand a group of people speaking a foreign language.  Groping for sight in warm, wet cave.  Longing to hear through earplugs and a hat. 

I had a spectacular migraine Monday evening.  One minute I was fine, finishing dinner with the family and looking forward to what remained of a pleasant evening.  I wasn't prodromal, and there was no aura.  Someone snuck up behind me and slugged me with a ballbat behind my right ear.  Within two minutes that same evil SOB pushed an icepick from the inside of my head out through my right eyeball, and left it there. 

The sound of rushing water over conversation.  Intense rain on your windshield at dusk.  Rotting manure over a flower garden.  The taste of spoiled milk after a cookie.  Sandpaper on a pillow.

The sudden intensity of this headache left me breathless and sweating.  I ran for meds, praying that they would work.  When I could see again I went to my room.  The medication helped, and after an hour I was able to sleep.  I slept for 10 hours.

Jogging in dry sand.  Searching for a lost child in thick fog. Communicating an urgent need to people in another country.  The slow-motion horror movie chase scene.

Yesterday was an easy day.  The patient load was light, the problems of reasonable complexity, the paperwork underwhelming.  But the headache hangover was appalling.  I felt like I was incoherently groping for words; as if the inside of my head was a whirlpool of molasses with pieces of needed information floating just out of reach in the muddy swirl.  It felt like an echo chamber.  My hearing had a delay switch.  The relay from brain to mouth was set at 'stutter'.  As the day progressed my level of anxiety rose to full nausea.  Everything I need is in there somewhere.  What if I can't make it all connect?

People wonder why I don't make Babygirl go to school when she tells me she has a migraine.

Praying for better brain function today.


Tuesday, April 8, 2014

THAT Kind of Day.....

Yesterday was a Monday.  We're stuck with one of those every week, and this one, like most, had its special challenges.  Why, might I ask, does time work differently on Monday mornings?  There appears to be plenty, and then *poof* - it disappears. 

The shower I use is on the fist floor, and my bedroom and closet, the second.  This requires at least one run up and down because I am not the type to lay out my clothes the night before.  After showering, I discovered that I had failed to snag a pair of socks for the day, so I ran back upstairs.  Due to the Monday morning time warp, I was running behind, so I grabbed a pair of knee-highs, spotted my pretty Old Navy bag, remembered that I have a pile of stuff at work that needs to come home, and thought "Hey, that's handy!", tossed the socks in, slipped my feet into my shoes intending to put on the socks downstairs so I wouldn't wake my still-sleeping hubby, dashed downstairs, remembered I needed to take coffee, filled the cup, put on my coat and ran for the door, tossed stuff in the car, scraped off the frost, got halfway to work and realized my coffee was sitting on the table in the living room and went to the drive-through at McDonald's for their free-cup-of-coffee special.

Monday morning is this: One long, unintelligible run-on sentence. 

Work was typically Monday-crazed, and I left the office a little before 7 PM.  I walked out the door into a light, cold rain carrying my full Old Navy bag.  About three steps out, I felt the cold rain hitting the tops of my feet and looked down.  No socks.  Not that it was easy to tell by looking - winter's been so long my feet are so blindingly white they could pass for gym socks without a problem. 

That's undoubtedly why no one appeared to notice.


PS I just looked up and my coffee from yesterday is still sitting on the living room table.  With the Old Navy bag.  Which is still full - of used coffee cups.  My Monday runneth over.

Sunday, April 6, 2014

The Yearly Medical Financials......

Last year was not bad healthwise for Babygirl - at least in the sense that she didn't spend any time as a patient inside any hospital.  The day-to-day struggle stinks, but it doesn't cost much.  The prize-winner in the sick-enough-to-die-twice-over contest this year was hubby.  It was his turn, after all. 

Hubby's hospital/emergeny admissions both in February and in July (with an appendectomy thrown in there just for entertainment) built up some substantial bills.  Not as bad as last year, but....

The breakdown (annual total for the family unless otherwise noted):

Medicare premiums (Babygirl):  $1258.

Prescription copayments:  $1796 ($150/month!)

Dental: $2460 (that was mostly me - root canal and all that.)

Eyecare:  $1106 (Babygirl has really bad eyes and I'm STUNNED by the cost of glasses)

Hospital and ER:  $4311

Tolls and parking: $266

Supplies:  $123

Mileage:  3586 miles (roughly 10K less than last year) @ $0.25 - $896

Total uncovered medical expenses (drumrole, please!):  $12,216.  Over a thousand bucks a month.  And I've no idea what I pay for our family health insurance since it comes out of my paycheck before taxes, but I'm guessing it isn't less than $100/month.

I could have saved a bunch if I'd just had 3 teeth pulled instead of replacing the bridge.  As it was, I still had $2000 left over that I paid off THIS year, frontloading the costs. Hubby and I could have made our glasses do for another year if we'd had to. That would have saved about $250/month, not counting whatever a removable bridge costs.  But DAMN.

We are lucky.  When we make choices like this we are sacrificing our future savings or giving up luxuries.  Most people do not have either of those cushions to adjust the budget with.  And we are blessed.  Very blessed.  We have no debt except the last of a car payment and a couple of years of mortgage.  We live safe lives, never have to decide between food and medicine, and can afford to buy movie popcorn when we go.  We can put money in the collection plate, tip the folks who make our coffee, and support our Compassion girls in the Phillipines. 

My patients make tough choices with limited resources. There are reasons why the poor sport cavities and dental gaps.  There are reasons why their diet choices lead to obesity, why their kids suffer the same problems.  The only thing harder for a poor person to get than good dental care is decent mental health care.  Choosing between cheap, filling pasta or bags of fruit that won't last the entire month is a no-brainer.  I am grateful, SO grateful, that we don't face those kinds of choices.


Friday, April 4, 2014


Shopping with the girls yesterday cost me some of my 'fix-problems-on-the-phone' time that is unique to my Thursday mornings.  Usually between 8 and 9:30 AM I make about a dozen calls to fix problems that range from doctor bills to phone/cable service to appointments and school conflicts.  I had a list of calls that needed to be made, and I was pretty sure I wasn't going to get to make them.

The shopping itself was kind of fun.  Ramming through Wal-Mart with three carts, waving at Squeaker whenever out paths crossed ( GAMMA!!!) and being the only people with large orders checking out - all entertaining.  Loading three FULL carts full of stuff into a Honda Accord was Tetris-ninja challenging.  The trunk was so packed I almost couldn't put my ice scraper in there.  Squeaker's car seat was surrounded.  Curlygirl had stuff under her feet and in her lap.  The girls unloaded my stuff and we made sure the perishables were put away.  We all unloaded Curlygirl, and then JuJuBee and BoosDaddy got the rest out.  I made it to work shortly after 9 and hit the phone. 

Babygirl has an appointment with a counselor next week.  I called our NP to discuss how to set up her gyn appointment, but she was rounding and I was told to call back in two hours.  The next time I had a moment to look at my cell phone it was 7 PM so that was never finished. 

I'm hoping today is kind.  I don't mind busy.  I don't mind giving my all at work.  But when my day is over I want it OVER with no tasks lingering on into the evening.

I want to come home.  I want to come home at five, not seven.


Thursday, April 3, 2014

Spreading Myself Thin.....

It's always this text from Curlygirl: "Whatcha doing?"

It's code for, "Hey, I need something.  Probably twenty minutes ago.  And it's going to cost you some time. And gas - and maybe money.  Oh, and it's of vital importance to Squeaker."

JuJuBee has a similar text, although hers is usually more upfront, listing specifically what she needs, why she needs it twenty minutes ago and what will happen to Boo and Sunny if I can't help - no wasting time with code for her.

LOL!  It's a part of parenting young adults that I didn't anticipate. The girls do their best to be independent, but they don't drive.  Generally what they need is totally doable - a lift to a grocery store, a pack of diapers the day before payday, use of the washer and dryer.  The problem is, sometimes, that I'm completely out of energy.  Work is tougher than it's ever been.  Babygirl's illness is exhausting sometimes.  Mom.  Housekeeping.  Headaches.  It all adds up, and sometimes I'm just not available 'twenty minutes ago.'

On the first both of them asked me to take them shopping.  Walmart and Aldi are so much better at stretching their limited budgets than the grocery stores within walking distance of their homes.  And I'm happy to help - I shop there myself, so it isn't out of my way to go, unless they pick a weeknight for the crisis.  Tuesday evening was out of the question.  Wednesday, worse.  So this morning I am leaving now to take everybody to the store at 7 AM. 

Pollyanna says, "Hey! One less thing to do on Saturday!"

Sometimes I want to slap that Pollyanna.


Tuesday, April 1, 2014


When I was in medical school and residency I spent a lot of time in and around New York City.  We were all broke, so we didn't chill at the Four Seasons or go to the latest Broadway hit musicals.  We walked.  We took subways.  We picnicked in Central Park.  We rode the Staten Island Ferry for a quarter.  And we always ate in Chinatown.

Chinatown has hundreds of restaurants.  Many fill with local businesspeople at lunch, some cater to tourists on the main drag.  But my friends and I had a favorite:  A noodle house just off Canal Street. 

The entire area smelled of fish.  The restaurant had a tank of eels in the front window for your personal dinner selection if eels were your thing (I confess I lacked the courage to try them.  Citygirl would have been ashamed of me then!).  There was not a Caucasian face or a fork to be seen.  And they made the most AWESOME noodle soup. 

Three kinds of noodles to pick from:  Thin rice, wide rice, or egg.  One delicious base broth (I'm guessing pork).  And about thirty add-ons, pick one:  Jumbo shrimp, sausage, poached egg, fish balls, octopus, to name a few.  The bowl was nearly a foot across, and the meal was hot and satisfying.  It cost $3.  The catch?  Well, learning to eat long skinny noodles with chopsticks and a spoon.  I wasn't kidding.  The restaurant had no forks.

One day, while struggling with this delicious but challenging meal, I watched a young Chinese mom feeding her baby.  With chopsticks.  One grain of rice at a time.  I was sincerely impressed.  To me it seemed to be the best fine motor skill exhibition EVER.  I knew then that I simply HAD to master chopsticks.

Sunday evening we took three grandkids out for Chinese, including eight month old Sunny.  And I got to prove my Chopstick Mastery.  One grain of rice at a time.