A Mailbox Full.....

After last week's trip to Philly, I arrived home to a surprise mailbox full of medical bills.  Not that bills are surprising in and of themselves: They are a normal part of our lives now for the past seven years.  What was surprising was that there were so many, so diverse in type, covering such a long period of time, all arriving at once.

Four of them were for amounts under $50. They were for Hubby and I, and were for office co-payments and his CPAP supplies and the like.  Got it.

One was for just over $500 for pain management costs.  We deliberately switched Hubby from the pain management program he was in to the one run by OUR hospital to get a better deal.  Looking back at old bills, this IS the better deal, but, DANG.

One was for over $1200, for Babygirl's recent visit to the Hypertension clinic.  Since they did testing available at out hospital (echocardiogram, carotid studies, etc), they are twice as expensive. In addition to the testing costs, the bills for the doctors who READ the tests, as well as the bills for the doctors who actually saw her that day, were also over $1000.

Her visit to her headache doctor, a different hospital, was about $500.

In addition, there are over $1500 in disputed charges still pending at both hospitals for tests that are considered experimental at CHOP, and for her headache medication at Nemours. Those bills may yet arrive.

The kicker bill was for just over $1000, and was for MY hospital stay in March of 2017 (MRI-asana....., Meeting A Donors Mom.......).  Why?  Why NOW???

There is nothing more discouraging than having more than $5000 worth of medical bills hit the week before Christmas, in a year where you have already purchased a new pool liner and hot water tank, paid out a TON in vet bills and been hit with a water bill of $2000 because of an unreported water leak.

I got on the phone.  For FOUR hours.  Most of the bills I can do nothing to change, except:  The medication at Nemours was properly billed and we won't be charged for it, $500 not to worry about.  The "experimental" stuff at CHOP really WAS experimental - it's data gathering, remember? (Security Blankets....), so we CAN'T be charged for that, $600 gone. 

And after four frustrating hours of being unable to reach my own hospital's billing office, I got a helpful soul who told me they had never sent me a bill for the March 2017 hospital stay because it had been paid in full.  Really? Because I have the damned thing IN MY HAND with this month's date on top, would you like to see it???  She gave me her name, her word, and told me to destroy the bill and not worry about it. 

"You people should pay for my blood pressure medication this month."  She laughed a little, and said, "We should."

Bottom line:  I've still got a crap ton of bills to pay.  I'm guessing that I'll be able to use our health savings account in January, but since that's a new thing to us, I'll have to see how THAT game is played when I get the information about how that gets accomplished.

DeeDee.

Unprepared....

I feel like Christmas is hurtling at me like a freight train, and I'm somehow just plodding down the tracks.  We finally have our little tree up, but Maisey un-decorated the bottom half while Babygirl and I were in Philly (all's well with her, by the way (Baybygirl, that is, although Maisey is also fine LOL), more on all that later perhaps). In the gift department, I have managed to get all the out-of-town things into the mail.  Locally, I was on time with Secret Santa. 

The rest?  Sigh.

I think I've wrapped four gifts. 

Usually, at some point, the spirit of the season settles in my soul.  I have to say that directing the choir has done THAT to an extent - my head and heart are full of lovely music, but my time and energy has been shortened because of it as well. Between bursts of music and work, I've been, well, tired.

I'm not accustomed to that.

So, I'm making an effort to sleep properly. Eating well has been more challenging. Exercise has slacked off some. 

But happiness?  Contentment?  I think I'm good on those. I'm looking at a four-day weekend here.  It's time to start some lists! Get the Santa Central Room hopping! Get that rum I bought Monday at the street market matched up with some eggnog and Christmas music and wrapping paper!

I can do this. I can feel it settling. 

And the true mystery of Christmas is a story of lack of preparedness. No one expected Jesus to come as he came:  A baby born in poverty, homeless, a refugee from political danger.  People who are "ready" for Christmas perhaps don't fully understand the real gift. I feel like I learn something new about it every year.

DeeDee

Before the Crack of Dawn.....

Babygirl has an appointment at CHOP today.  It is a testament to how routine this has become that I am  still sitting on my couch with a dog in my lap, drinking coffee, and enjoying my Christmas decorations.  She is still sleeping.  So would I be, but Simon the SeniorDog got up to pee at 3:30, and then realized he forgot some other urgent outdoor business at 4, and by that time I knew it was time to just give up and make coffee.  In about 2 minutes he'll think it's time for breakfast LOL.

Maisey has utterly ignored the Christmas tree.  I expected her to be a problem.  It's LARRY who keeps rubbing his head into the branches. Last night Capone yelled at him for it.  That seemed an unlikely turn of events all the way around.  Who can predict dogs??

There were four grandkids here yesterday.  I can tell.  Every picture frame in my living room is askew because of the vibrations from the running and yelling.  They each settled long enough to make a gift for their moms for Christmas, and my tree is still standing.  Next Saturday is Cookie Day.  I think I need to buy more wine.

Lord help me: Squeaker wants to learn to crochet.  I. Am. Not. A. Good. Teacher.  Just ask Citygirl.

Random thoughts on a random morning.  Pray for us as we head into the Poconos in the cold, rainy dark.

DeeDee

Cooking.....

I like to cook. My mom was an adequate cook when I was a child, but it wasn't until she got competitive with the other Baptist Church ladies that she began to really branch out.  Both Hubby and I have memories of meals we will NEVER cook for our families:  Chipped beef on toast, Pork chops cooked to shoe leather consistency. Tuna noodle casserole. Spam.

I never tasted a Brussels sprout until I ate dinner at a friend's house and her dad picked some from the garden. "Salad" at our house always had some kind of macaroni or potatoes in it. I never had a piece of whole wheat bread (although we did have some awesome black Russian rye bread).

When I moved out, I was on an extremely limited budget. I learned how to balance plant proteins, and ate very little meat. I learned how to cook soybeans.  I just never learned to like them.

Over the years I've learned a lot of things about how to feed a lot of people for not a lot of money, and how to entertain, and how to get a meal together with either a little or a lot of effort, but no matter what, I generally enjoy the process. 

My Dad once said, "I never know what to expect when I sit down for dinner here, but it's always good!"  He wasn't a man to toss out a complement lightly, and I remember that one with gratitude.

DeeDee

PS It's quiche tonight.

Weather....

When I grew up, weather just seemed to happen.  We'd wake up, and there was sunshine. Or rain. Or snow.  People talked about it, and there were weather reports, but they tended to be vague and no one seemed to expect them to be at all reliable.

Now, my phone pings, and tells me that rain is going to start, and be light (or heavy) in 5 minutes, so I need to make choices NOW about what to wear, whether to walk now or later, or whether to put a sweater on that nearly furless pup.

I mean, it's not that they're never wrong predicting next week, but in the minute-by-minute? They GOT that stuff. 

So this morning I need to ignore the condition of my house and get stuff in from the yard.  We have snow coming.  And while many people aren't looking forward to it at all, I don't mind. 

I watch the Make-A-Wish site.  Recently, a desperately ill child's wish was to See Snow.  The pictures of that child enjoying a winter day made me smile all the way to my toes.  Sure, she didn't need to shovel any, and likely never will, but it made remember, REALLY remember, the childlike delight of snowmen, snow angels, sledding, and catching snowflakes on my tongue; and the absolute gratitude of shedding layer upon layer of snowy wet clothes to share a hot drink with my Mom at the  warm kitchen table afterward.

DeeDee

Full Hands.....

Larry decided to go for a walk with us the other day.  He's an old man, so he won't walk if it's hot, or if it's raining, or if it's.....well, whatever it is that makes him feel lazy most of the time.

 But the other day it was cool and clear, so he came along, giving me two big dogs and a little dog to manage.

Along the way, I passed a woman who was juggling a cigarette, an umbrella and a coffee cup.  She looked at me and said, "Wow! You've got YOUR hands full!"

Ignoring the irony of the moment, I responded, "It beats having them empty."

This is the fundamental truth of life.  We can either rejoice and thank God that our hands are too full, or we can live with emptiness.  When I had 7 kids in the house, I heard the "you have your hands full" thing ALL of the time.  It took me a long, long time to realize that I prefer them that way.

DeeDee

My New/Old Job.....

Before Babygirl became ill I was our church's choir director. I really don't know how long I did the job. I thought it was just a couple of years, but sorting through the old music, I've come across four years' worth of cantatas, so.....

But the year before Babygirl go sick, I got sick. I was out of work for about 5 months recovering from a spectacular bout of migraines (yeah, that can happen) and had just come back when we learned about B

abygirl.  Looking at what her needs were going to be, and how often we might be gone, I resigned the position.  Sadly, there was no one to replace me for a couple of years, and the new director, when he arrived, was, well, more traditional. But he was a student. I figured he'd graduate and move and then I'd volunteer again as Babygirl's health stabilized. But he kind of, settled in.

So this past summer I reapplied for the job versus the current director. And I thoroughly enjoyed terrifying everyone at my day job by letting them know I was applying for a new job.

I started again in September. 

Lordy, I am out of shape for this. 

It's not just the standing and waving your arms around part (although we have a couple of people, entirely new not only to the choir but to music in general, who took a bit to understand exactly WHY I was waving my arms around LOL), it's the hunt for the right music, learning the music, making sure you have enough copies, because initially you had 6 people and now you have 16 (THAT's a good problem to have!) and finding the time to clean out and organize spaces that the last THREE choir directors have been neglecting (Oh, oops, was one of them me?? My bad.)  I figure it's about 4 - 8 hours of work for every anthem. My Fitbit tells me I walk up to 2 miles during each Wednesday rehearsal, and at least one mile on Sundays at church.

This is what Choir prep looks like.

But music lifts my heart and gives my soul purpose, and I'm grateful.

DeeDee

Walking......

One of the blessings of my life is that I live in a small city with good sidewalks, parks, and streetlights.  Anyone of my patients who lives here and tells me they "can't afford" to exercise gets a fairly stern lecture from me about the affordability of feet, and the fact that absolutely everybody has the same amount of time in a day, and choices about how they use them.

When I decided to improve my health, I began with two very fat dogs (Simon and Garfunkel) and one morbidly obese human.  I began to walk a mile a day, which in my neighborhood is a circuit around the three blocks nearest my home, and it includes what, at the time, I considered to be a substantial hill.  A mile initially took me about half an hour, maybe a bit more. 

Garfunkel sadly died young, and I've walked Simon into senility, and have gradually increased my walks to at least three miles daily (about 40 minutes with a dawdling hound dog), more on weekends.  And that big hill?  Pah!  There are no big hills in my neighborhood, but there are steeper ones, so I make it a point to climb at least one of those every day.

One of my more judgmental hobbies as a physician is to take note of the patients who are closest to my age and see how I am doing against the pack, as it were.  This is grossly unfair, of course:  My patient population is poor, under insured, undereducated, and overrepresented by refugees and immigrants.  I look pretty good by comparison LOL.  However....many of my similarly-aged colleagues have died, of cancer or cardiovascular disease, or more frighteningly, suicide.  I'm not looking too bad against THAT pack either.

I have health issues.  But I'm still walking. At 60, it's something big to be grateful for.

DeeDee

The Beauty of Change....

One of the things that I've come to dread, in a way, is change.  New medical information on anyone in my family makes me very anxious, and I think, honestly, that I was never really an anxious person before.  Shy, yes. Introverted, yes. Depressed, sometimes. But in my interior world, repetitive and useless worry really never had much of a voice until Babygirl became ill.

But I live in a part of the world where change is a routine and frequently breathtakingly lovely part of life.

Raking leaves is inherently meditative. You can lose yourself in the sound, the smell, and the coolness of the air, and be grateful.

DeeDee

The Annual Month of Gratitude.....

It is, amazingly enough, November again.  I'm not sure how it happens so rapidly.  Eight years of November blogging.

I'm not promising daily posts. Clearly I can't, since I already missed the first two days LOL.  But since I did miss two days, here are the three first, most important things I can think of that I am grateful for so far this month:

1) I am not blogging this from a hospital. In 2012 we descended into headache hell and had it cross paths with sepsis hell and ended up in CHOP for a week. This post does not do justice to the level of desperation I recall from this day: In An Old House In Paris. (Start here if you want to see the whole week; Fever and Toxic Waste) This is what I talk about when Babygirl and I represent Make A Wish at events:  The knowledge that we were going to go and see Paris gave me something to give her to hold onto that long, long night. I can't even type it without tears of gratitude to those wonderful Wish Granters.

2) Although Babygirl still has her headaches, far too frequently for my taste (or hers), there is yet another new class of medication out there for migraine prevention that may help her.  We'll be talking to neurology next month.

3) I had nothing but good news from my own doctor at my visit this week. My sugars were higher than I liked, and my weight had been 'stuck' for quite a while before my last visit, and so I finally asked for a weight loss drug. My doc thought it was a good idea, but my insurance thought I wasn't fat enough to actually need it. THAT was eye-opening, so I kicked the exercise up a notch and added an extra mile to my morning walks. You know, I weigh myself every day, and check my sugar, but was pretty convinced that I was doing poorly on both counts.  Turns out my testing supplies are outdated, but my scale is pretty accurate. My sugars are good, and my weight is down an additional 10 pounds this year, bringing the total weight loss to 90 pounds in the past 12 years. (Well, truth be told, I've probably lost about 184 pounds, because if you lose 5, gain 3, lose 5, gain 10, well.... you get the idea. The struggle is real.) It was heart-lifting in a year of struggle. Right now I have dropped from "morbidly obese" through "obese " to "overweight," but I weigh now about what I did going into high school. The goal is to weigh what I did coming OUT of high school, which, since I am an inch shorter than I was then, will still leave me "overweight" from a medical standpoint, but I think a 115 pound weight loss goal seems reasonable.  But it's not about the pant size. It's about making an effort to be there for Babygirl.

DeeDee

Security Blankets....

Babygirl and I just returned from a trip to Children's Hospital of Philadelphia.  Our visit today was to the HAVE (Hypertension and Vascular Evaluation) Clinic, a rare program designed to attempt to assess the long-term vascular issues that can develop in children with a diagnosis of high blood pressure, especially in the face of any other significant disease.

Babygirl is 19 now, but was diagnosed with high blood pressure by her local nephrologists while she was awaiting dialysis at age 11. It continued, oddly, assessed but untreated, during the duration of her dialysis. After the transplant, which she received at CHOP, her nephrologists there jumped all over it and started her on antihypertensives.  The medications continued until a severe infection (never fully identified, but triggered by the severe immunosupression caused by her anti-rejection medications) dropped her blood pressure dangerously low.  Emergency IV fluids, rescue steroids, antibiotics and general chaos ensued, and her blood pressure stabilized. Inexplicably, it never again returned to abnormally high levels. This is not typical in either children or adults, by the way.

However......

Babygirl was already enrolled in the HAVE program.  And I learned some things that, as a physician, both fascinated and frightened me.

The scientific community knows precious little about what is normal about the vascular systems of children.  How thick are normal arteries at any given age, and in any given location? How do hundreds and hundreds of normal hearts look? And what, actually, is NORMAL blood pressure for any age child? 

That last surprised me.  I mean, I've been checking blood pressures on kids for years, and measuring them against a chart I have copied and posted on the back of my door to show students.  It's not a bad guideline, but it's not nearly as comprehensive as it should be.  So HAVE clinics all across the world have been making an effort to get the answers to these questions, and they need kids like Babygirl, who are patently NOT normal, to show up and get studies done too, which is why we made a second trip this fall. HAVE clinic simply did not match up with her Botox injections.

It's a marathon day, usually.

It generally starts with blood work, but since we do that at home, we were planning on arriving a bit later than usually. We left early enough to be 45 minutes early, time enough to eat breakfast and check in.  The traffic had other plans, however, and we barely made it to the first appointment exactly on time.

Echocardiogram, check. 

Vascular studies (ultrasounds to measure the thickness of the walls of her carotid, renal arteries and aorta), check.

EKG, not needed this time, check.

Breakfast sandwiches wolfed down between tests, check.

Sprint from third floor of old building through 3 other buildings across the new bridge to the 9th floor of the amazing NEW building, check (glass elevators, view of the rivers - bonus!).

Visit with both the new nephrologist specializing in hypertension and our old cardiologist, check.

All of her blood work was fine. The vascular studies were a slightly nerve-wracking "probably normal for a 21 year old with a transplant" with a recommendation for a repeat in a year instead of a flat dismissal from the program. Well, crap.  Not check?

Exercise stress test, not needed this time, check.

Come home wearing a 24-hour blood pressure monitor, check.

And here's the problem with this:  If they are still struggling with normal (although honestly, they've locked that data down pretty well in the 7 years since we first held THAT conversation), how well are they doing with the data on the not-quite-normal kids?  And when you get information about minuscule changes in arterial thickness, not only do you not quite know what it means (in either the short or the long term), you don't really know what to do about it.

"Eat healthy, exercise more, be more careful of your weight."

Alrighty, then. Because we never thought of THAT.

This is just one more nebulous way that I feel that I can't control anything. And it's an outward expression of why, even though Babygirl hasn't had an inpatient admission in over 5 years, that I haven't been able to empty this little drawer:

It's at my sister-in-law's nightstand. She gave me this drawer in 2012. It's full of emergency supplies.  It has a toothbrush, deodorant, lotion and other toiletries. It has jammie pants and socks and clean panties and a spare bra (I've had to replace them twice with smaller ones for me as I've lost weight and bigger ones for Babygirl as she's grown up). There's a deck of cards and a couple of simple games and a Sudoku book and a pen. It used to have $20. I haven't needed a single thing in there, not once, in 5 years.  It's a testament to my lovely sister's patience that she hasn't suggested, even once, that I could take my stuff home now.  She knows where the cracks are. And she loves me enough to know they can't be fixed, but that a small security blanket can sooth the small, frightened child in me that comes to visit 4 times a year.

DeeDee

Summer Disasters.....

We have long joked about belonging to the $1000-Disaster-of-the-Month Club, but of late the membership has been more quiescent. We no longer count our expected medical bills as "disasters."  They are simply part of our annual background costs, budgeted for ahead of time.  And we keep a pretty healthy emergency cushion on hand for when the life-gives-you-lemons-so-you-gotta-buy-a-freakin'-lemonade-stand crap happens. We do, honest.

But this summer....holy cow.

Very early in pool season, the grands left the gate open and Maisey got up onto the pool deck. Since the other dogs can swim, or hate the water and stay away, it didn't occur to them to watch the new puppy (who, at 8 months old was about 70 pounds of solid dog.) 

Who can resist that smile?

She fell in, panicked, and tore the aging pool liner in her struggle to get out.  REALLY tore it.  Repair was really not an option,  We love our pool, so replacing the liner was the obvious choice.

Worth it. Grandkids love pools.  I love pools.  It's a good combination.

This is a very old picture LOL

Then our Larry got Lyme disease, and a repeat of his stomach bug stuff.  Why is it that the dogs always get sick on weekends when the affordable vet is not in? 

We forgive you, Larry. 

At the end of LAST month the hot water heater on our side died - right after I had bought plane tickets to go see Citygirl in Napa. (She says I need to change her BlogName, since she hasn't been a resident of the Big Apple in years, and wine country of one sort or another is her future.  Since she's an executive in the Culinary Institute of America, could we go with CIABaby?  Probably not.)  The trip was amazing.  Hot water is vital.  We managed.

Things appeared to be calming down a bit, but earlier this evening, Curlygirl sent me this from her apartment, which is the other side of our house:

Well, heck.  That's a bit of a problem.  Even more so since Babygirl and I are booking off to Delaware tomorrow morning to see her neurologist for her Botox injections, so Hubby gets to deal with this one on his own.  Our handyman's been alerted but he can't do anything until the roof leak that caused this has been fixed.  I see some re-wiring in our future as well.  

Yippee Skippy. 

I've been working on not cussing so much. They say God loves a challenge, right?

DeeDee

Peculiar Journies.....

I've put on a lot of miles since starting this blog, but except for the rare emergency run-and-get-someone-who-brokedown-someplace I've not really had many solo trips.  But right now I'm in the middle of a trip to California to visit Citygirl, going it alone. 

I think the last time I flew without a child was in 1983, for a medical school interview, although technically Babygirl WAS 18 when we flew to Austin last year, but....you know what I mean.  I see parents with tiny babies in the airports and I think of flying by to Pakistan when Citygirl was 6 months old:  THAT was an adventure!

But this trip so far?  Well....

I've driven the Northeast Extension of the PA Turnpike so many times in the last 7 years I could likely do it in my sleep.  I prefer daylight, but last night I left home about 6:30, so I hit twilight in the Poconos, in the eternal construction. I was traveling about 74 MPH (speed limit is 70, so don't judge to harshly LOL) in the slow lane with an 18-wheeler passing me on the left, curving with the road to the left, when I spotted one of those HUGE tire chunks that are all over the side of highways.  This was full-width, full depth, and absolutely 100% unavoidable due to the lack of available shoulder space on the right.

I aimed my tires for either side of it and hoped I'd clear it.

To judge by the almighty scrape and rattle, clearance was an issue, but i didn't hit it with my tires, so the car trajectory stayed stable.  And then......nothing else happened.  No shimmy, no rattles, no smells, no warning bells or whistles, nothing.

I pulled off at the next exit and crawled around under the car with a flashlight and couldn't see any marks at all.  Phew!

Airport stuff in Philly this morning was a breeze, and we arrived in LA with no problems. 

I went to my next departure gate (an entire 15 steps away) showed them the boarding pass, I was issued right before I got on my plane in Philly, and had THIS bizarre conversation:

Me:  "Is this the gate for this flight in 3 hours?"

Agent:  "Oh, MY! This was issued so LONG ago! You should have called in case things changed!"

Me: "I just got this pass a few hours ago in Philadelphia."

Agent: "But that's clear on the other side of the COUNTRY!" 

Yes.  Yes it is.  That's what happens when people get into airplanes, and land in major airports, but it seems silly to explain that to someone who WORKS in a major airport, really. But she's clearly convinced that I am unaware of all this, so I carry on.

Me:  "So the gate has been changed?"

Agent, checking computer:  "No, this is the right gate."

Me: (Internal voice, "What the f*** just happened?") Polite big girl voice:  "Thank you."

I've been up now for almost 12 hours, had about 4 hours of sleep for each of 2 nights in a row, and I can't WAIT for the next leg of this journey.  On to San Francisco!

DeeDee

We Have a Lot of Memories.....

I realized this year that we've been going to Bethany Beach in Delaware for 20 years now.  Well, we began in 1998, and missed one or two due to Babygirl's illnesses, but still.....

The majority of those years we've rented the same house.  Some years we've switched out because we couldn't plan ahead, didn't have as much cash, or didn't have as many people, but this year we had "the house" - the one with the under-the-eaves room with 4 single beds where all the girls slept when they were little. 

Except.

All those girls have grown up. And the ones who came on vacation with us all have BOYS.

Not that there's anything wrong with that! I'm just accustomed to girls. (And by the way,  I discovered I rather like boys.  Not as whiny or sneaky as girls, at least based on this limited exposure.)

Boys (big and small) seemed more fascinated by historical outings, generally.  And they loved looking for crabs in the shallow water, and I BIG granny points when I picked up a 12 inch horseshoe crab out of the water.  "Is THAT ALIVE?!?!?!?"  "Sure. Wanna hold it?"  Universal negative responses LOL.

An awesomely funny moment when a grandson shouted out his "Hey, Grandma!" reading of this shot glass in a crowded gift shop.....without realizing the alternative meaning of the phrase.....

Crab Dinner. A Thursday Night Tradition.

                                                                               

Me and Babygirl, Sunshiney and Healthy

We had a week of sunshine when rain was predicted daily. We had lazy days, bike rides, tides, sand castles, and swimming pools. We had nightly family dinners and games, outdoor showers, endless loads of beach towels in the washer, dolphin shows, and sunrises. 

At one point, Hubby looked at me and said, "We've go a lot of memories in this house." 

We do.  I mentioned a couple of years ago that I was going to miss having three generations there, now that my parents are gone.  No more Gramma and Grandpa, getting confused about the color of the Uno cards.

But we still have three generations.  Just....now....I'm Gramma. 

I think back to 1998, and realize that 20 years ago, my mom would have been the age that I am now, and she was not able to get in and out of the ocean.  She couldn't ride a bike anymore. She could walk a few blocks a couple of times a day, and she could eat an all-you-can-eat crab dinner like nobody's business, but her grandkid time was limited to a short walk to to the Candy Kitchen and the purchase of a Beanie Baby, and the nightly games at home.  I'm towing all the beach supplies in the trailer behind my bike every day and showing people how to use a boogie board.  (Makes me feel less guilty about my read-a-book-a-day habit.)

And my girls are grown ups, and their sweeties are grown ups, so the garbage got taken out, and towels were magically folded, and dishes just...got....put...away.  And it wasn't always me or Hubby.  It was a nice vacation.  

DeeDee

When Was The Last Time...

Babygirl and I were on some journey or other a while ago and heard a country/western song: For the First Time (Darius Rucker). "When was the last time you did something for the first time?" For Babygirl it had been less than a day. For me, well, I had to think about it.  Hard,

As we get older, I think, we've done more, so "first times" become somewhat more rare on that basis.  If I recall correctly, Babygirl's "first" at that moment was writing a check. THAT ship sailed so long ago for me that I'm sure the hull's been replaced a time or two.  But sometimes I pass some "first times" by for other reasons:  Babygirl's recent foray into parasailing didn't appeal at all for reasons of seasickness and a appalling vision of happens to 60-year-old bones if you drop them a few feet.

Be that as it may...

Our mission trip this year included several wonderful "firsts" for me. 

Our project type was not a first - it was flooring.  But it was the first time I've ever had to remove an ENTIRE room floor.  From the kitchen.  With the family actually living in the house, using the kitchen while we were working.  The subfloor had been saturated by a leaky central AC unit (repaired prior to our arrival).  The floor was so weak that when we removed the laminate overlay it immediatly collapsed in places, becoming a moldy, wet, danger to all of us.

Oh, and this was the first time my family has included toddlers.  In the house. While we were taking out their kitchen floor. Which was, incidentally, between their living room and the bathroom.

How Conveeenient.....

Especially the two days we disabled the stove.  The fridge moved into the living room.

This was, however, also the very first time in 15 years of mission trips that I have ever had the priveledge of FINISHING a project.  Out homeowner actually cried when we laid the last piece of tile.

This was also the first year that Babygirl was not on my team. She had decided ahead of time to split off on her own.  At 18, she's old enough to watch out for her health hazards.  Honestly, it turned out to be a good thing. We had an extremely moldy project.  Hers was much cleaner.

The other churches populating our center were wonderful, and every night there were games and laughter.  We learned how to play Egyptian Rat Screw.  We taught them Tenzi.  Dairy Queen was enjoyed by all.  And as always, we go in knowing that we aren't going to be enough, have enough, do enough, but that somehow, God IS enough.

DeeDee

...So She's All Right Now, Right?.....

I saw a note on Facebook about a local teen missing graduation because he just got a heart transplant. "Thank God he's going to be all right!" is the general gist of the comments. People have no idea at all how difficult this child's next year is going to be.

People are generally kind, and mean well overall.  But as the parent of a chronically ill child (and the wife of a chronic pain patient), I've come to the realization that many people really don't quite "get it" when it comes to what the word "chronic" actually means.

When people learn of Babygirl's kidney failure and subsequent transplant, the commonest response I hear is, "So she's fine NOW, right?"  It's like the question I was frequently asked when she first needed dialysis:  "Is it BOTH of her kidneys?" Neither of these questions make sense to me, as a doctor.  As a special needs parent, even less so.

"Yes, she's fine unless you're concerned at all about the anti-rejection medications that supress her immune system and make it possible for her to get very sick very quickly and increase her risk of getting cancer.  And transplanted kidneys only live about 15 years on average."  "You mean she has to take those meds for the rest of her LIFE??"  Well....yes. At least until the current kidney fails and she goes back on dialysis and waits for another transplant.

The same thing happens to Hubby.  "You mean the surgery didn't fix your back?"  Well, it un-paralyzed his leg, so he can walk again, but his back will never be okay - that really wasn't what the surgery was for.  He gets asked this so often (and honestly, by the same people over and over) that he doesn't even want to go out.  He's tired of talking about his back. Ask him about the Rumble Ponies or something for crying out loud.

I read this article recently: The Isolation of Special Needs Parents. While the author appears to have a child with considerable physical disability, it applies to us nevertheless.  The part about not being able to REALLY talk about it without sounding as if you have no joy in your life, or don't want to be that child's parent, is very true.  "How's Babygirl?"  "She's doing fine, thank you." is commonly the extent of my conversation on the subject.  I get tired of explaining that she isn't fine in a hundred different ways, and that I'm not always fine with THAT.  Being able to tell truly supportive folks from emotional ambulance chasers has become an art form.

I belong to a group of kidney kids' parents online, and the support is pretty amazing.  Where else can a parent toss out a question about the color and quantity of their kid's pee and get a real answer? Who else can you ask, "Did your kid ever take this medicine?  What happened?" Where else can you go for a list of what you need to pack for a long hospital stay?

It's been more than seven years since she was "all right."  We're just doing as well as we can.

Pray for that teen with the new heart. Pray for his family, for strength for the journey ahead of them.

DeeDee

Lorna Doones and Ball Gowns.....

Babygirl's long struggle with the education system has left us missing some monumentous milestones.  Unlike her many sisters, I haven't had to shop for party dresses (there used to be a website called 10dollarstore.com that was a favorite), or annual spring and fall school clothes.  She didn't attend her 8th grade dance.  HIgh school graduation is still a distant hope.

This past two years, a few co-workers and friends who have kids her age have been sharing pictures:  Prom gowns and tuxes, limos and fancy dinners, caps and gowns.  I'm happy for them, truly.  But it made me understand, a little, how infertile women feel at baby showers:  That's just not going to happen for my kid.  So I smile and say the right things (and sincerely mean them all!) and then grieve for what she's lost.

But Babygirl has a friend from school who hasn't left her behind.  She's graduating this year, and she invited Babygirl to the Prom.

So.  This happened:

Babygirl and I went shopping.  Got shoes, a dress, accessories.  Curlygirl took her for a mani/pedi and makeup, and did her hair (and since I paid for her Cosmetology education, I figure that was about the most expensive hairdo I've ever bought).

Babygirl and her friend got dressed here at the house.  And her friend handed me an envelope for prom photo packages. So while they were finishing pinning curls up on the third floor, I came downstairs to wrestle with my checkbook to see how much I was willing to pay for bad prom pictures.

You never know, ever, when a memory is going to take over an already emotionally-charged day and hit you right in the tear ducts, but:  I dropped back to 2001.  We had just expanded from 2 kids to 6 overnight. We'd needed beds, clothes, everything.  Money was tight, VERY tight.  I had school photo packets in my hands, and needed to be able to write checks, RIGHT NOW, for money I simply didn't have.  My mom found me crying on the back porch, and wrote three checks for $17 so three little girls (two of whom had just arrived and were virtual strangers to her) could have their pictures done.  

I sat with my checkbook and wept for a bit, missing the women who made the hard things in my life possible:  Mom, Grandma, Bobbe - and so many more.  

And then I spotted the package of Lorna Doones.  

Backstory:  I've donated blood all of my adult life, and joked that I really only came for the cookies.  So a few years ago, when the Red Cross switched to Cheez It crackers, I complained.  My friend Marj mans the snack table at the church blood drives, and she noticed.  Last blood drive, she bought a box of Lorna Doone cookie packs, just for me. I swiped an extra pack for the road, and forgot about them.

I hadn't had lunch, dinner was still a long way off, and I was thirsty and tired. I grabbed a can of seltzer an opened my little pack of crumbled cookies and ate and drank like it was communion, and it was:  The communion of Women Who Support Each Other.  A reminder that there are still, and always will be, women friends in my life who would drop everything, do anything, be anywhere.  I washed my face, wrote a check, and went upstairs, saying a prayer that Babygirl will always have that same support.  

She's got a good start.

                                                                                                                                                                 

And that's all I can ask for her.

DeeDee

PS Oh, and that check?  It got left on the floor of the bedroom during the prom-gown excitement.  But it was never the issue anyway, was it?

The Hairline Fractures....

I'm an avid reader.  Always have been.  Books, road signs, cereal boxes: Whatever is in front of me, I read.  Inevitably, some random line, however unrelated to me in the context in which it was written, will catch my heart and stay for a while. 

Tony Hillerman's daughter Anne has continued his Joe Leaphorn Navajo detective series (one of many genres that I truly love).  Frequently a second author in a series will fail to really manage to get the spirit and the language of the series (although David Langercrantz did well taking over for Steig Larson in the Girl With The Dragon Tattoo series IMO), but so far...

At the end of the very first chapter of her first Leaphorn novel, Spider Woman's Daughter, she uses the phrase, "the damn tears forced their way out, rushing through the hairline cracks in her willpower."

Well.

I had to put the book down for a bit.

If ever there was  a phrase that spoke of what it is like to parent a sick child, this....This is a good one.  

You see, I think I was pretty solid once.  But "solid" and "unbreakable" are not at all the same thing. Drop a china cup once and you'll see what I mean: It goes from "solid" to "shattered" in no time at all!  But even things that are less fragile than china cannot always take being slammed over and over and over again.

Don't get me wrong: Babygirl is doing quite well, for now. She isn't graduating high school on schedule, but she has been asked to attend her prom, which touched my heart far more than I would have thought, pushing tears out "though the hairline cracks in my willpower" far more often than I would have imagined possible, actually.  When a fragile child (oh, she's gonna hate being described that way, I'm betting!), more accurately, a medically fragile child, makes a milestone that you, as a parent, were 100% certain you would not see arrive?  It shines a light in your soul; a bright, happy light.

And all those hairline cracks?  Well, I guess they let more than tears leak out.  

DeeDee

Trolling for Kidney Donors.....

Periodically, my comments box gets hit with requests from people seeking organs for other people. Sometimes it's a one-off, like when we were searching for a kidney for Babygirl.  But more frequently, it looks like this:

"Attention, Welcome to specialist hospital, Are you interested in selling your kidney to overcome all your financial problem, Welcome to M** Hospital. Do you want to buy a Kidney or you want to sell your kidney? Are you seeking for an opportunity to sell your kidney for money due to financial break down and you don?t know what to do, then contact us today and we shall offer you good amount of money for your Kidney we specialize for top class medical treatment like Heart Surgery, Cancer Care, Spinal fusion surgery , sleeve mastectomy surgery , and other major surgeries. Contact (k***@gmail.com) INFORMATION NEEDED: Passport Copy: First Names: Last Name: Sex: Age: Your blood group: Date of Birth: Phone Number: Occupation: Monthly Income: Reason for selling: Do you smoke?: Country: State:"

Or this:

"We are urgently in need of kidney donors in K** Hospital India for the sum of $450,000,00,All donors are to reply via Email only Email: k***hospital@gmail.com WhatsApp +91 555-555-5555"

(At least in these examples things are generally spelled correctly. In many, some from the same locations, there are misspellings which I suspect are deliberate attempts to avoid spam filters.)

$450,000 seems to be the standard going rate for a kidney, and it hasn't changed any over the past year or so.  

It's appalling from just about every conceivable angle.  

When Babygirl was waiting for her kidney transplant, someone suggested that we go to India and buy a kidney. Rupee against the dollar, it's not that expensive to stay in India, but I've no idea at all what hospital care costs. Most of the doctors are trained in Brittish-style medical schools, but the hospitals can be anywhere from world-class to third-world in quality.  But the ethical issue is this:  No one rich sells their kidney.  A system that allows for organ sales inevitalbly takes unmerciful advantage of the poor; most likely not to their ultimate benefit. (This is a bit dry, but it does cover the topic well: Bioethics of buying and selling organs)

That being said, one would think that India has an almost unlimited number of people so poor they would most happily sell an organ.  So why is it that these people are advertising over here, and for such an incredibly high price?? What's the catch?  

I almost expect that I will get requests for the email addresses and phone numbers from people who are willing to find out. I scares me more than a little. 

DeeDee

Expanding the Garden....

A patient today mentioned getting blood work done at one of our local draw stations, and it triggered a memory of my mom.  The station he went to was the one closest to her house, and before the floods a few years ago, it was a busy doctors' office.  Like many of the practices, it was nicely landscaped.


My mom and her best friend noticed the flowers. They admired the flowers.  In fact, they coveted the flowers. After a couple of years, they noticed that the perennials were getting pretty dense, and maybe someone helpful should thin out the bulbs?


So one day, they dressed in workman-like clothing, drove up with tools and mulch, and worked on the gardens at the doctors' office for a couple of hours.  They did this in broad daylight, rightly figuring that doing this at night would make them look suspicious. They pretended to be professional gardeners, neatly thinning out plants and quietly taking the excess bulbs and shoots home to plant in their own flower beds. 


Yup.  My mom stole flowers from the nuns.


You cannot beat the chutzpah of old ladies. 


Squeaker and I plan to plant some seeds for the garden this weekend. I think I will not share this story with him....yet.


DeeDee

That's the Way the Money Goes...

It's that time of year again: That fun-filled season of receipts and record keeping that allows us to get our own money back from the government. It's time to see if having chronic kidney disease pays, right?

Such is life.

But there is good news, on the medical financial front: Costs are down all the way around.

Last year, medications cost us a total of $3416.  This year, that's up a bit to $3509.  That rise is uglier than it looks because LAST year we paid two $300 copayments for Botox. 

Last year's doctor/hospital total was $7302.  This year we're down to $5893 (plus $463 for glasses, which I somehow think we failed to get for anybody last year).

Parking went down from $157 to $112, and medical mileage from 3,040 to 2,111, which gives us $401 mileage expense.

That makes the grand total $7415, about $618/month, almost $400 less/month than last year.

That being said, there were still more than a couple of times when I couldn't pay the bills in front of me with the money in front of me, and had to work out payment schedules (for a period of 4 months, I had three different hospitals on autopay), but at no time was I behind on anything, and all of the bills were paid by the end of the year.

More interesting, from a My-Kid-Has-A-Chronic-Disease perspective, Babygirl is no longer the person whose bills are the highest. She is only on a handful of prescription medications, and hers are all generics.  Hubby is the worst on the prescription costs, with me a close second.  I'm the only one of us who was hospitalized in 2017, although Hubby's pain management bills were nearly as high as that little bill. I had some MASSIVE dental bills last year. Having all of Babygirl's blood work done HERE instead of in Philadelphia has saved us literally thousands of dollars. Best of all, she's likely to qualify for Medicaid this year, taking almost all of her medical costs off the table entirely. 

We won't make the medical deductable this year.  We'd have to have a taxable income under $74,100 to deduct even $50 of it, and I do make more than that (we have made the medical deduction cutoff three different times, so it's worth the trouble of combing through every single credit card record, bank statement and receipt LOL), so we are very blessed this year all the way around.

DeeDee

Nine Hundred Dollar Headache...

Sometime earlier this year I had a week of migraines.  Not as bad as a few years ago, but a definite escalation of symptoms over normal.  I did my best to get them knocked down, but when I developed an aura within an hour of taking a migraine rescue medication, I tossed in the towel and went to the ED. Endless Artificial Energy....

The final bills are all in.

The total cost for a roughly 5 hour stay (2 of which I passed in the waiting area) with no lab work or x-rays of any kind was just under $2000.  My portion?  Just under $900. 

If I had known that the day I had the headache would I have made a different choice about where I got my care?  Likely not.  I couldn't keep fluids down very well, couldn't keep my eyes open if the lights were on, and I needed to get it under control before it did brain damage.  Yeah, I needed to be there.  And the bottom line for us is that if I don't make the deductible, someone else will, like Babygirl, yesterday. 

But if I didn't have a bank account with a cushion set aside to meet that deductible?  If I knew that I'd have to choose between needed monthly medications, or groceries, and that ED bill?  I'd likely have tried to tough it out somehow. 

We are blessed enough to know that we will be okay.  We've been through some miserable times and learned that you can't plan ahead for everything, but we DO plan ahead, and the reall blessing is that we CAN. 

I see people every single day who can't - who make such low wages that the idea of having $100 socked away for an emergency is beyond imagination, let alone $1000 or more.  I just wrote checks for that emergeny bill, for about $400 for Babygirl's last visit to Philly, and another $900 for dental bills.  Generally speaking, I don't think healthcare should be a luxury.

DeeDee

St. Pat's in the ER......

Since my mom died a little over 2 years ago I haven't  had to hang out with anybody in the ER (except me:  The last THREE ER visits for the family have been me.  No - wait - I think Curlygirl had one... it's all a blur LOL).  Generally speaking, though, I haven't been in an emergency room wondering if I'm going to need to run home and pack a suitcase in preparation for a 4 -hour ambulance ride.

But last week Squeaker turned 6, and invited a dozen of his closest little germ-vector cousins to come over and tear his house apart to celebrate.  It was a 3-hour madhouse of screaming kids, jabbering moms and dads, and cake.  Since then, everyone in the house has come down with something:  Squeaks had a high fever and a bellyache for a few days, I've had a cold, Curlygirl is achy and incredibly weak.

Yesterday Babygirl spiked a fever of 103, took some aspirin and it went away.  She told me about it this morning.  I reminded her that fevers are important, and she needs to tell me, but she looked quite well, so we worked the concession stand for the basketball games at church, did grocery shopping and ran errands, and she was fine. 

At 8:30 she sent me at text (it's our version of an intercom - her bedroom is on the third floor - don't judge me!) letting me know that she had a temp of 101.2 and she needed some medicine.  She had taken some aspirin about an hour earlier when she had some bad chills but wasn't really feeling better.  I preregistered for the ER with In Quicker ("fever/kidney transplant/safer to wait at home) and got a call back from a nurse within 5 minutes:  Don't wait. Come in now.  On the way in she started coughing hard enough to gag. Her temp was 103.3 by the time we arrived, and her heart was racing.

By 9:30 she was roomed and tests were in progress, and by midnight we were given a diagnosis of presumed influenza.  We're waiting for the second liter of fluid to finish running in, and then we're out.  The doctor was kind enough to push some meds to help with the migtraine du jour as well. 

It's good to know that we don't need to leave town. It's good to know that she can safely be considered to have a viral illness and sent home.  It's wonderful to know she has enough white blood cells to fight this off.

But.  Squeaker had fevers this high for three or four days, and I told Curlygirl to keep him home because it was so clearly viral.  We still can't take that chance with Babygirl. And we never will be able to.

DeeDee

What Would It Be Like.....

When Babygirl turned 18 in September, I put in an application for her for Social Security Income.  She qualified at age 11, when she was first diagnosed with kidney failure, but did NOT get it because of my income:  It's 'needs based.'  But at this point she is still struggling to finish high school, has headaches at least four days a week, has an immune system too weak for her to work with the public and handle money, and she can't see well enough to get a driver's lisence, so....what kind of work can she do?

The majority of people under the age of 50 who apply for Social Security are denied, at least initially.  Babygirl qualified on the first try. 

So this morning we went to the credit union to set up an account for her so Social Security can direct deposit her checks.  During the process we decided she needs a checking account so she can take over paying her own medical bills, and added my name to her accounts in case she gets too sick to manage her money at some point.

On the way out of the bank, she asked, "I wonder what it would be like to be healthy?  I mean, it probably would be less expensive...."

Oh. My. Freaking. God.

Yeah, it would be different.  We'd be setting up an account so you could deposit money from your first job. I'd never even consider putting my name on it.  We'd be going out for breakfast instead of trying to figure out why the local Social Security office doesn't have ANY parking within a quarter mile of the place and, good God Almighty, child! "Less expensive"????

College would be expensive.  A new CAR would be expensive. An apartment of your very own would be expensive.  I'd happily bankrupt myself to pay for ALL of it if it meant you never, EVER had to wonder what good health felt like.

DeeDee

It Was An Accident, Honest.....

My insurance company sent me a form to fill out the other day.  Clearly getting an MRI of one's shoulder followed by a series of physical therapy makes them wonder...

"Recent claims indicate that you may have suffered an injury.  Was this due to an accident?"

In other words, should I be billing my auto, homeowners or workman's compensation insurance instead of them? 

"If so, are you planning on suing anyone?"

It's tempting to fill out the form with the entire story, just so they can have something to put on the Insurance Adjuster's Wall of Fame, or to giggle over at the office Christmas party.....

"Well.....

"Now that you mention it, it WAS due to an accident.  You see, I was making a snowman with the church youth group, and my drill bit snapped in half!  That made the drill jump, and the broken drill bit drilled right through my thumb joint.  Lucky the bit was broken or it would have drilled me to the table!

"I had a couple of rounds if IV antibiotics and a tetanus shot, but when your wrist is immobilized and you have only your fingertips to work with, you can really jack up your shoulder trying to pull your pants up!"

Yeah.  I don't think I'll be suing anybody over that. 

Besides, our insurance agent assures us that we made the Wall of Fame when our pool caught fire.

DeeDee

So They Kinda Had to Fire Me....

The reason I was so in need of Retail Therapy last week was because our computer software at work was, well, doing what it was apparently designed to do.  That is, if you believe (as I have strongly come to suspect) that it was designed by the minions of Hell Itself.

About two weeks ago I noticed that when I was clicking on the last of the 5,856 buttons needed to turn this incredibly awkward program into a patient note, the computer was inserting the wrong addresses for the patients' follow up instructions.  Since the Headache Hell of 2010 I've only worked in one location, so telling people to see me in 2 weeks in a location 20 miles down the road was nonsensical at best.  I assumed that this had been happening since they installed the new program last October, and that I had only just noticed this particular glitch (since there appears to be at least one glitch per day to trip over). 

Tech support happened to be on their biweekly visit to our building, so I pointed it out.  They looked into it and discovered that I had no less than EIGHT erroneous addresses and phone numbers listed in the system.  No problem, they said. We can just take them out, they said.

The next day I started to get messages from pharmacies that my prescriptions couldn't be filled because they didn't have a phone number attached.  That seemed so far-fetched that I initially just re-sent a couple dozen scripts, continuing to send new ones as well.  Since I send in about 100/day, this began to pile up in a MOST significant way by the second day. 

I called tech support.  Interestingly enough, the response was along the lines of, "What addresses and phone numbers? We never took anything out?" And as Satan's little helpers continued to work on the problem, patients began calling to complain: "Where's my prescription???"

So by this point, for every prescription I've sent for nearly three days, there are at least three messages:  The original request, the bounce-back, and the patient re-call. We have no way of knowing for sure what is missing and what's gone through.  They are now shipping all of my refills to the residents and my nurse practioner, effectively doubling their workloads, and the front desk and the nurses are getting KILLED with phone calls and irate patients.   I can feel my artieries hardening, because as I am seeing patients I have to remember that I CAN'T SEND ANYTHING TO A PHARMACY.  I have to add what I want to their medical history, and then ask someone ELSE to send it. I forgot that detail more than a few times.

This drama went on for a FULL WEEK.  Ultimately they had to install some massive new program, field test it, and then let us run it.  It worked for everything except controlled medications:  No pain medications, no ADHD medications, no anxiety medications, and in some cases, no seizure medications. 

The final fix as I understand it involved suspending all my priveledges and then reinstating them. 

A thought hit me as I arrived home on Friday evening, and I sent this text to my office manager:  "Would you call human resources on Monday and just make sure I'm still on the payroll?"

One full week after everything was working again, we are still having patients call in or show up to see what the heck had happened to medications that they thought had gone to pharmacies, some insisting that they wouldn't leave the building until they knew for sure that the prescription was actually sent in.

Holy Lord.

DeeDee

Retail Therapy.....

I walked the dogs at 8 this morning, luxuriously late, after sleeping until almost 7.  This is so far past my usual wake up time that I missed my first two hours of 250 steps on my FitBit. 

I was at Aldi by 9, Walmart by 9:35, and my hairdresser by 10 on the dot, which is when my day sort of organically devolved into a me-fest. 

I went from there to the Farmer's Market, oddly unaccompanied, and bought the only thing I'd really specifically come for:  The amazing coffee.  Oh, I got some carrots and stuff to justify my time there, and enjoyed the walk, and....

OhMyGoodness.  Is that a MASSAGE chair??  A dollar a minute?? Let me see how much I have with me LOL.  I limited myself to 10 minutes but it was time well spent to unkink the back of my neck after my ice fall(s) the other day (did I not mention that?  I think I won't if I didn't.)  Then I got to thinking.  If I just got my hair done, it's probably been a while since my last pedi....

Off to the mall I go.  My pedicurist is busy, and asks if I can come back in half an hour. Well, sure, why not, I haven't walked much today.  I head off with the mall-walkers until I stumble over a sale at one of the few stores I really love but usually don't indulge in.  I find work pants that fit beautifully, and some shirts, and...HolyCOW a half hour goes fast.  I book it back to the pedi place and get to soak my toes while sitting in a massage chair for a delightful extra 20 minutes while my lady finishes up her previous customer. 

All in all it was a lovely morning.  Now I have finished  sledding and building snowmen with the grandkids while their mom gets the laundry done, and then, personal homemade pizzas.

Considering how work has been for the past two weeks, it's been a very restorative day.

DeeDee

On Eagles and Wings....

Super Bowl Sunday.  AND the anniversary of the transplant.  Six years.

I watched Babygirl fill her pill sorters last night, just part of our weekly routine now.  "Is iron once or twice a day?"  Geeze, girl!  get it straight! Twice, and multivitamins, once.

It IS confusing.  The true majority of her medications at this point are "nutraceuticals."  Supplements to help support her kidney function, fill in nutritional gaps, and decrease (theoretically) headache frequency.  And since these aren't prescriptions, they aren't labeled as to daily dose.  They're expensive, too, but I've discovered I can get about a years' worth on Amazon Prime for the same as it would cost at Walmart for about 4 months, so...

It's routine.  Normal.  Keeping an eye out for food recalls that could be dangerous to her.  Being vigilant about preparing food at home, and kitchen cleanliness.  Expecting to spend $200 or more every time we walk into the pharmacy.  It is what it is.  And it is, overall, good.

Her last kidney studies were excellent, her anemia is minimal, but there is one nagging little study that indicates that something in the background isn't working quite as it should be. They're trying to mend it with Vitamin D (yes, really. It does matter - keep your levels UP.).

But today will be for relaxing.  We will watch the game, rooting for the Eagles (hey! We spend a LOT of time in Philly! If my home-town Bills don't get there, it's next-best, okay?), and eating chicken wings (no Blue Cheese for Babygirl - there's mold on that cheese so she can NEVER have it) and other unhealthy treats and playing out new family game:  "Donner Dinner Party."

It's as good as it gets.  I'm intensely grateful.

DeeDee

Six Long Years.....

When we got the call to hit the road and run to Philly for Babygirl's kidney transplant, it was a massive three-ring-circus event.  I was still packed from the false alarm earlier in the week, but Hubby was not. Babygirl had nothing ready. The car had no gas. And Babygirl herself was actually AT SCHOOL.

But however chaotic, tense, and nauseatingly hopeful our morning was, her donor's family was having the utter opposite:  Finishing a long night with no remaining hope; and deciding to send what little hope they had out into the wider world to attempt to bring meaning to a loss so monumentous as to defy all logic and language. 

How would I feel, now, six years after the loss of a child, knowing that parts of him were still out there somewhere, alive - and sustaining life?

I'm sure that there is some blessing there. But to me it seems so small a thing against the loss.

Keep Jorge's family in your prayers.

DeeDee

Endless Artificial Energy...

Tuesday evening the right side of my head began 'tweaking.'  It wasn't really a typical headache thing, exactly, just a pinging pain above and behind my ear that came and went, sometimes with movement, sometimes for no reason.  It woke me up a handful of times before midnight. Migraine pills didn't help.  Hydrocodone knocked me out between 'pings' but I didn't sleep solid.

I worked Wednesday, and it seemed okay, or at least not intrusive. Wednesday evening?  More of the same.  By the time I was done with work on Thursday I was exhausted, and the 'pinging' started as soon as I got home.  I'm not a crier, but I cried, which scared my hubby a bit.  I gave up on the pills and tried a glass of white wine (reds can make it worse).  I slept a bit at first, but my Fitbit testifies to a bad night.

I got up Friday morning already exhausted, took the dogs for a walk and got ready to go to Physical Therapy (oh, that?  My left shoulder's a bit torn up for no apparent reason.  I'm hoping PT will help me dodge the surgery bullet) when some bastard hit the right side of my head with a baseball bat.  (If I EVER catch that invisible so-and-so....!)

I took three Tylenol and some sumatriptan, and logged on to the Emergency Room's pre-registration site.  I figured I'd have more than enough time to do my PT before they'd be able to see me.  (I was right. I arrived 20 minutes late and still waited a couple of hours.  Of course, there were three codes called while I was there.  I have some kind of bad ER karma.)

IV Benadryl, Reglan, and 2 liters of saline.  Percocet and prednisone.  I came home, took more sumatriptan and another hydrocodone and passed out on the couch for about 6 hours, woke up for about 4 hours, took more  prednisone and Benadryl and went to bed.

This morning I awoke at 5:30 AM with a fully functioning brain for the first time in what felt like ages.  I walked the dogs three miles.  We went to the farmer's market and the grocery store. I've done 5 loads of laundry and 2 loads in the dishwasher. Two bathrooms are toothbrush-to-the-grout clean.  The rest of the house is dusted and mopped.  Babygirl and I made halupki for the first time. I hit 10,000 steps on my Fitbit for the first time this year by 3 PM.  Oh, and I read a book.

And we haven't eaten dinner yet.

I freaking love prednisone.  It's almost worth the inevitable crash.

DeeDee

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.

DeeDee