Saturday, May 24, 2014

Creative Tme Wasting.....

It was time to head out the door.  If we left NOW I'd be at work on time.  And we were doing well - showers done, keys in hand, all missing items accounted for. 

Then came the all-to-familiar sound of a pill sorter hitting the floor.

You have two choices in this situation:  Waste time losing your temper and yelling about clumsy wastefulness, or pitch in with a smile and help clean it up. I opted for the latter.  And since we were about it, I got out the pill bottles so we could sort out not only the sorter, but whether anything needed to be ordered.

Twenty minutes later, all pills accounted for, pill sorter neatly filled, list made for the pharmacy.

"Okay, Babygirl, take your pills so we can get out of here!"

"Oh, I took my pills before I dropped the sorter."

Silly me.  I imagined she dropped the sorter as she was getting it out, not as she was putting it away.

Once again there are two choices:  Kill her and call your friends to help you hide the body (any mom with a teenaged girl would be there in a heartbeat), or spend the day mocking your teen as you tell this story to all your friends who have ever had a teen girl.  I once again opted for the latter.


Monday, May 19, 2014

Weekend Warriors.....

Babygirl's intended move to the third floor is a work in progress.  Cleaning out the equivalent of a frat house's worth of junk was only the first step. 

The room needs paint.  The flooring is painted, splintering plywood, certainly not cleanable to post-transplant standards.  The closet doors have never fit correctly, a product of a learn-as-you-go DIY project. 

A trip to Ollie's yielded a massive red rug.  Since I'd already told Babygirl that I am never, ever, ever painting another room red, we headed to Home Depot to look at paint colors.  "White.  Not necessarily Zombie Apocalypse White, but one light color." We snagged a handful of chips, ran out to the truck to compare them to the rug, and settled on a color called "Natural Gray."  It's a big room, so five gallons and some paint supplies later (oh, and all the plants we need for the veggie garden), we were on out way home.  Babygirl and I got one of the dormers done by bedtime.  Did I mention that this was AFTER our pricey dinner at The Dog?

Saturday is cleaning and grocery day.  It was going to be plant-the-garden day, but the rain was a bit to heavy.  But a cool, rainy day is a very good painting day in a third-floor room.  The center of the room is`14' x 20', with two 8' x 12' dormers and two large closets.  The walls are mostly four feet tall and blend upwards into the ceiling.  The only flat part of the ceiling is 4' x 8', so it is most sensible to consider the walls a ceiling all of one piece.  It's a LOT of painting.  Fit in general life.

Sunday was a horrible headache day for Babygirl.  I went to church without her, and when Hubby came home he and I tackled the garden.  It was cold - we put on our jackets and started digging.  And took them off when the sun suddenly baked us.  And back on when it started to rain.  And hoods up when the hail hit.  Amazingly enough, we  finished.  And the garden looks fantastic.  

And.......back to painting.  While we were finishing it up, Hubby and I spent some time chatting about floor options.  Today he made another run to the visit the Orange Apron guys, and he came back with the next layer of stuff to put down so we can put down something we can clean.  We have 20 4' x 8' sheets of this stuff.  Hubby got it into the house so the ongoing schizophrenic weather wouldn't get it, but Babygirl and I have been hiking it up two flights of stairs one sheet at a time.  We have two left - our strategy has been to move one during each commercial set during Warehouse 13's season finale.  We have two to go.  I guarantee they are the heaviest ones.

The good news is that all this work has brought my blood sugar down.


Saturday, May 17, 2014

Restaurant Review......

We went out for dinner last night to a local icon:  The Lost Dog.  I first went to the Dog when it was located in my neighborhood.  It was the first true coffee shop in our city, predating the updated Dunkin Donuts and any form of Starbucks.  The original shop was in a horrible old building - originally a garage by the look of it, and more recently a fish shop.  The Lost Dog featured funky, hand-tiled tables, mismatched brightly painted orphan chairs, sagging couches and excellent coffee.  The limited menu nodded toward Moosewood. 

When The Dog moved downtown, they took their tables, chairs and couches, added a coffee bar and upgraded the menu.  I can't say I went often, and I confess it's been years, but I always enjoyed the ambience. 

Hubby and I like to support local restaurants over chains.  While there is something to be said for the consistency of the menu from one Friendlys to another when you are on the road, there is more to be said for the sheer adventure of seeing what your neighbors are cooking up.  So we frequent the local diners, small ethnic places, the odd bar.  And last night we decided that we hadn't been to The Lost Dog in, well, a dog's age, so...

The funky couches, tables and chairs are gone, which made me sad.  The coffee bar is unchanged.  The menu has a very nice variety, the food was fresh and well-prepared.  Our steaks were cooked correctly and our server was attentive, prompt, and very good at paying attention to our food limitations and allergies without any fuss.

But I was a bit stunned by the prices.  We eat out fairly regularly, so we are familiar with the range of restaurant meal  prices.  This one came in at the high end.  Given the prices of the entrees, I am more than a little annoyed that we had to pay an average of $4 per person extra to get a rather small salad.  And given the fact that this began as a coffee house, the quality of the coffee was rather so-so for the price.  And the place was LOUD.  Hubby and Babygirl and I had a discussion about how the restaurants in Paris have a pretty low noise level overall.  It was difficult to converse over dinner due to background noise and music.  TGIFriday is quieter, and that is saying something.

My advice?   Go for the Friday evening happy hour and tapas bar.  Or go to The Loft. 


Saturday, May 10, 2014

Some Docs for Her, Some Docs for Me....

Babygirl isn't the only one who has been busy catching up medically.  Last week I saw our family doctor.  In addition to the shingles shot I had a crap ton of blood work.  I was a bit behind, having missed a six month set, oh, say about six months ago.  Since the formal step up form prediabetes to diabetes four years ago (triggered by the medications for my headache madness), I've had very good control.  We're all familiar with kidney numbers here now, so let's talk diabetes numbers.

Normal blood sugar should be 60-100 fasting.  There is a test called a Hemoglobin A1c (HgA1c) that sneakily measure the amount of sugar that is trapped inside red blood cells that can give an accurate average of daily blood glucose over a period of three months.  Normal for this test is 5.6 or less.  There are lots of ways to assess prediabetes - elevated fasting sugars from 100-123, alterations in cholesterol and other lipid levels, and elevate HgA1c 5.6-6.3 (plus or minus, depending on whose guidelines you are following).  For the sake of simplicity (and because my cholesterol is controlled independently of my blood sugar) I'll stick to the A1c as my guide. 

At its worst, until now, my A1c has been in the 5.8-6.2 range for the past 8 years, including the past 4.  The first year of Babygirl's illness I fought hard to maintain my three-times-weekly workouts and daily walks.  The second year, still fighting.  But this third year....

I don't know what happened.  I can blame the headache medications - they are exhausting.  I can blame the headaches themselves, and the discouragement that comes with them.  I can blame my exhausting worry over Babygirl, and the addition of my Mom and her care to my schedule.  But I really want to blame my bank LOL.  When our bank sold itself to another bank, my gym membership renewal failed to enter the 'new' checking account automatic withdrawal system.  And I failed to correct it, and just stopped going.  The dog is aging out of inspiring long walks, the winter was terrible, and you can't ride your bike to work in the snow, right? 

It's all bullcrap, really.  I put on 10 stubborn pounds in the aftermath of Babygirl's transplant and never lost them back.  My recent foray into gabapentin for headaches added an additional fifteen, largely because I had long since stopped the exercise habit and had no reserves.  And my A1c last week?  An appalling 8.2. Of course, if I had tested my sugar even once at home in the last three months I'd have picked up on that, but, true confessions here, my sugar had been under perfect control for seven years.  I haven't been as vigilant as I should have been.

The rest of my blood work was pretty fabulous except for my cholesterol, which, of course, lives and dies by the blood sugar control.

To complicate matters further, I saw my neurologist this week.  She is, needless to say, appalled at my lack of headache control.  We went over the list of failed medications:  Amitriptyline, imiprimine, Depakote, Topamax, verapamil, diltiazem, nadolol and gabapentin.  The summatriptan generally works to treat the headaches but I went through nearly 20 of them in the past two months. The increasing frequency and severity of the headaches, coupled with a couple of interesting new auras (something feels like it is under the scalp on my right side, pulling it tight and wrinkling it), have made her restart the steroids.  Going on the steroids four years ago sent my sugars into the 400's from a baseline of 120.  Baseline right now is 220, so that's getting wonderful, but I haven't had a headache since they started.  I'm starting Zonegran (seizure med, completely unfamiliar to me or my knowledge base) as a last-ditch effort to avoid Botox.  But if it messes with cognition (like the majority of the seizure meds have) I am DONE. 

The only good news here is that I am the only person in the history of the universe to lose weight on steroids.  I'm down five pounds and eating anything but protein makes me sick to my stomach, so here here. 

Ugh.  Damn.  And ugh.


Thursday, May 8, 2014

Two Days, Three Doctors.....

Our trip to Philly this week was out of the ordinary for a variety of reasons. 

First, we took Mom to my brother's house.  It's not that we never do this, but the last time was in August.  Mom is getting harder and harder to motivate to leave, and she's having increasing difficulty getting in and out of the car.  Unlike my Aunt Mary, who stubbornly continued doing her physical therapy exercises until the day she died, my Mom is content to just sit.  For the most part, she seemed to feel that conversation was an absolute necessity, so she just kept on talking.  And talking.  And talking.  The final approach to home went like this:  "Is this Broad Ave?  Why are we getting off here?  Why are there so many Pepsi trucks?  I think I'm growing beard!" (That last combo sent Babygirl into complete hysterics.)

Second, we took the time to catch the subway and head into downtown historic Philadelphia.  All Babygirl knows of the City of Brotherly Love is CHOP, and while it's a great place, it's hardly her happy spot.  For a child who loves museums, real estate and shopping, Philadelphia has a TON to offer.  We saw the Liberty Bell, Independence Hall and the Bourse.  We took a horse-drawn tour of the neighborhood and now Babygirl has a list of things she wants to do 'next time.'  It's good to have some positive energy in that direction!

Third, we hit the King of Prussia Mall.  If you are ever in need of some indoor exercise, I highly recommend the place.

Last, we saw three sets of doctors.

 As usual we saw the transplant team.  Everything there is fine. They made no changes in her medications, her anemia is better than usual, blood work at home in 6 weeks and see you in three month.  Appointment scheduled.

We saw a gynecologist, since Babygirl has been quite irregular since dialysis started.  She was lovely, interested in more than just reproductive issues, and kind.  She prescribed medication for Babygirl's acne and for another chronic rash that we've shown everybody that no one else was at all concerned about (it's cosmetic, not dangerous - but cosmetic matters to a 14 year old at the beginning of summer, so kudos to her for noticing).  She gave Babygirl medications to regulate things, see you in three months.  Oh, and we aren't scheduling out that far, so call in three weeks to get that set up.

We saw the neurology nurse practitioner.  She asked how things were and I told her things are horrible, thank you.  Turns our she isn't the correct NP - we were supposed to be scheduled with the one who is on the headache team (and we would know this how?  It was noted in the computer, but apparently not where the scheduling staff would immediately see it, and she wasn't available 8 weeks ago either). When she heard our story, she made us wait for Dr. Y to check on things, asked why we weren't here sooner, or why didn't we call?  We tried.  When things got bad in January we DID call, we did try to schedule an appointment for 8 weeks ago to coincide with our last trip down.  I made clear the urgency of needing to be seen but their scheduling is so bizarre it wasn't possible to make it work.  And, mea culpa, I didn't ask for a call back to discuss things.  On the flip side, no one offered a call back as an option. 

Our options for treatment are limited.  Babygirl has tried as many medications as are safe given her overall condition.  They want us to increase the Keppra to a mind-boggling 1500 mg twice daily since she initially saw some improvement with this drug.  They are going to ask nephrology about using triptans to treat the headaches when they occur since right now we have no effective treatment.  They are going to ask about switching up her blood pressure medications to see if that helps.  And if this fails, they are going to try Botox.  Seriously?  Botox suggested for BOTH of us?   For people who are not biologically connected we have an awful lot in common.  Oh, and see you in 6 months.  Six??? You thought her symptoms were serious enough to yank the Doc into the room without an appointment, and you are going for six month follow up?  The logic escapes me.  Oh, and we aren't scheduling out that far, so call in 5 months to set that up (this scheduling practice is why it is so damned difficult to see this doc in a timely fashion).

Sigh.  The transplant and the kidney disease are about the least of our problems right now. 


Wednesday, May 7, 2014


My sister-in-law's nephew is autistic.  His disability is severe.  He is unable to speak more than a few words.  He has difficulty with fine motor skills.  He has never been able to make his needs known.  His parents are devoted to him, but have never heard "mama" or "dada" from him.

He attends a special school that specializes in teaching autistic kids.  They've tried, over the years, to teach him, well, anything.  They never give up, never stop trying, never stop innovating.  And last weekend, they found a miracle.

They have been using iPads with the kids, helping them learn how to manipulate a touch screen, familiarizing them with a keypad.  They discovered that if they support Finn's hand, he will purposefully tap keys.  His first message?  "No color."  They replaced the colored keypad program with black and white.  And off they went.  Finn, who cannot talk and appears uninterested in most everything, can READ.  And SPELL. 

Remember how relieved you were when your toddler could finally ASK for something to eat instead of just screaming?  Imagine if you waited 13 years for that moment! Imagine being Finn, and FINALLY finding a way to make people listen to you!

Miracles.  They happen.


Sunday, May 4, 2014

One in a Thousand......

I saw my family doctor Thursday morning.  He's not happy about the headaches and wants them controlled (not that I disagree, but I'm doing all I can from this end!).  Everything else except the fifteen pounds I added because of the gabapentin seems okay to him, pending blood work results, of course. 

Because Babygirl is not immune to the chicken pox despite two vaccinations, the transplant team has asked Hubby and me to get shingles shots, so I asked for one, and told him that the team had told me to simply cover any resulting rash (live vaccines.  Sometimes they imitate disease.).

He laughed and said, "What, that's like one in a thousand, right?" 

Yup.  One in a thousand. 

Guess what I have? 

I'll be walking into a clinic full of transplant patients with a silver-dollar-sized patch of blisters on the back of my arm, all oozing varicella virus.  Long sleeves and a gauze wrap should keep it all safe, but JEEZ, really?


Saturday, May 3, 2014

Die Fledermaus....

There is nothing quite like a night at the opera, especially if you know nothing at all about opera.  For a music lover I have always been woefully ignorant on the subject.  My hometown was not known for the arts.  Our highschool put on a musical once in a while, and plays frequently, but not opera.  And while our high school chorus teacher did a great job introducing us to classical music, he was an open admirer of Baroque music.  If I learned an opera tune (not counting the theme from "Pippin"), I can't recall.  Bugs Bunny did what he could to remedy the lack, singing "Figaro!" at the top of his lungs in the shower, but it wasn't enough.  So I never have the slightest clue what sort of thing I'll be seeing when I go.  Tragedy?  Comedy?  No idea.

Babygirl, however, is a fan of the opera.  She's a fan of any stage show (almost left the 'e' off of that, and spellcheck would have missed it!).  We were gifted tickets, so we made a night of it.  We drove downtown to discover crowds of people.  We'd forgotten about First Friday, and our theater is in the heart of the arts district.  There were street performers, restaurants were full, and there were a much larger than average number of families with small kids wandering everywhere.  It took us a while to realize that not only was it opera night and First Friday, but the circus is in town.  It was a good thing we went early - parking got tighter and tighter as we wandered around deciding what to eat.

The opera was hysterical.  The music was lively, the cast talented, the costumes lovely.  Many of the people seated near us were so familiar with the music that they were dancing in their seats.  I've never heard such laughter at a classical performance.  It would have been the most fun imaginable, except...

Babygirl and I were both on edge a little.  Migraines trigger so easily!  Both of us were aware of the shrill of the piccolo warming up, the sharp edge of the percussion, the dance of stage lighting on costume glitz.  Each of us knew that anything - or nothing at all - could trigger a headache that would send us both home. 

Migraine is a crap shoot.  You never know when you're going to need to pull the car over.  There is no predicting when you are going to have to choose between suffering the pain of the supermarket lights or leave a basket full of needed shopping behind.  Keeping a Ziploc bag in the bottom of your purse for sudden nausea is normal. 

I had severe headaches Wednesday and Thursday nights.  The week before last I had headaches for six days in a row.  Babygirl has them almost every day.  Making plans more than a few hours ahead is a big risk.  Migraine adds a level of fear to every aspect of life:  Every plan, every hour, every moment.  Is this when it's going to hit this time?

But it makes the good times all the sweeter.  Babygirl and I came out of the opera house laughing and triumphant.  We both made it, we both had a great time, and we both laughed out loud.  A LOT.  She took my hand as we were walking, both of us jabbering about the joys of the evening.  Nearing home, I took a corner rather abruptly, and Babygirl said, "You're going to fast!"  "We didn't die, did we?"

Her reply was profound:  "How do we know we didn't?  For all I know I died when I was born and I just don't know it yet!"  I asked, "If we don't know we're dead then what is the point of dying?"  "I don't know if dying has ANY point."

Amazing thoughts.


PS As best I can remember Bugs Bunny never sang anything from Die Fledermaus.

PPS Even after watching the entire opera, I had to come home and use Google to find out that a fledermaus is a bat.  Shoot me - I'm slow.