Friday, December 23, 2016

Family Medical Leave.....

Today is my mother's 79th birthday. Last year at this time, Mom was actively dying.  Babygirl's health is always precarious. Citygirl had gotten married just a few months before, and my Dad died less than a month before THAT. All in all, I was running out of paid leave.  So, for the first time, I put in paperwork for FMLA.

The Family Medical Leave Act is a legacy of the Clinton years.  The rules are (relatively) simple.  If your employer has more than 50 employees within a 50 mile radius, they must grant FMLA time to their (usually full-time, been-on-the-job-at-least-a-year employees).  FMLA time is time off without pay (up to 6 months/year) for personal illness, illness in a family member where the employee's presence is needed to provide care, or the birth/adoption/foster placement of a child.  The employer is required to hold the employee's job for them while they are off.  Leave can be continuous or intermittent.

I applied for leave on Babygirl's behalf.  I could just have easily used my mom, or myself, but my office manager played rock/paper/scissors for me and picked Babygirl.  To get the leave, I had to fill out paperwork with  human resources, and send papers to her doctors.  It was a pain, because they didn't do it right the first time and I had to send them back, and I was crazed between work and home and hospital and grief and family and... Well, you get the idea. (Side note:  One of my elderly patients mentioned to me this week that I look much better this year than I did last year.  I wasn't sure if I was flattered or horrified.  Needless to say she passed her dementia screening.)

This year, around the beginning of November I had a flash of foresight and checked to see when my FMLA was due to expire, realizing that after having been ill much of the summer that I was in the same situation I was in LAST year in terms of remaining time off for the year.  There was less than a month left, so I sent in an application.

Within a day I got an email denying my request for leave because I had to wait another two weeks (until just two weeks before the old leave expired - which, given how complex it is to set the leave up in the first place just seems rediculous in my opinion but nobody ever asks me) and reapply.

Needless to say, I totally forgot all about it.  Until this week.

Last week I had noticed that out checking account balance seemed a little low.  Since Hubby and I both have access to the account, and both of us have been known to make purchases (pharmacies and gas stations being the most common) without recording them, I have a habit of keeping a pretty large balance hidden in the account.  I assumed that Hubby (or I) had paid something and failed to write it down. But when I got our bank statement on Tuesday, I realized that my last paycheck was substantially less than it should have been.  Since it is direct deposit and there are no paystubs, I had no idea at all that this had happened.

When I got to work on Wednesday I checked online and discovered I had been paid for only part of the two weeks I worked.  There was no obvious explanation in the pay document as to why, so I called my manager, and she discovered that I was no longer on her payroll. AT. ALL.  Awesome.

It turns out that despite being denied FMLA leave, despite having no medical documentation of my need for FMLA leave, and despite having applied for intermittent FMLA leave, I had mysteriously been granted continuous leave, beginning when my old leave expired.  I had unknowingly been working full-time without pay for about three weeks, and was less than two days away from my next paycheck, which was officially set to be $0. That's a FABULOUS paycheck to get two days before Christmas, aye?

My office manager worked on this frantically for two days, but at the end of it all, I'm not paid.  Merry Christmas, indeed.

Thankfully that built-in buffer that I leave in my account kept us from bouncing things all over the place. But it isn't big enough to catch everything that is going to start pulling out of our account at the end of next week, so here's hoping they get this figured out.

DeeDee

Tuesday, December 6, 2016

Mourning....

It is no surprise that I am still mourning.  It was about a year ago that mom took the fall that was, in the end, The End.  (I instinctively looked back to find the blog post about the fall, her hip fracture, and all of the rest but....there is a massive gap from December 1, right before she fell, until February 4, just days before her death.)  A lot happened in between there.  I guess, in a way, that is what this post is about.

December is Mom's birth month. Last year she spent her birthday in the hospital while they worked out doses of pain medications adequate to manage an irreparable hip fracture.  She was oblivious to the time of year, and had entered that phase of dying that includes visits from long-departed loved ones.  It was clear she would never come home, and decisions had to be made about her belongings, her kitties, family photos, trinkets and jewelry.  I had to work.  I had to make Christmas merry for the grandkids.  I had to manage her finances, figure out nursing home paperwork, visit her in the hospital and still attend to the usual miscellaneous medical needs of Babygirl and the rest of us.

It was a whirlwind.

My brothers came and sorted through thousands of pictures.  Curlygirl used her internet savvy to get a lot of furniture sold and moved out.  And as Curlygirl and family had already planned to move in and help, they went forward with the move, directly into the chaos.

January was hardly better.

Sorting/selling/settling continued.  Mom was moved from the hospital across the street to a nursing home 10 minutes away.  Hubby had massive back surgery.

February brought baby BamBam, followed immediately by a run to Philly for Babygirl.  We arrived home, exhausted as always, late on Wednesday evening.  I debated a run to the nursing home but was just too tired.  As I was getting ready to go in the morning, I got the call that she had just passed.  And not even one minute later came a call asking me if I could come pick up Squeaker at his school because he was throwing up and they couldn't reach his parents?  I'm not kidding, not even a little.

Just writing this down brings on a head spin.

We live in a crazy, crazy world. And we live at a frightening pace.  And while we did have really good family time at Thanksgiving with Mom before her fall, and good family time at Christmas before she died, AND good family time at her funeral.....it just didn't seem like enough, you know?  I look back on those three months and it's like looking through a kaleidescope of shifting, bright brittle colors:  Beautiful, but difficult to interpret.

What triggered all this, you ask?

At the end of yoga class today, because the room was chilly, the instructor came and covered each of us with a blanket during shavasana, the final quiet pose of the class.  The act of having someone 'tuck me in' was so intensely evocative of my mother that it made me weep.  And while I was lying on my back with tears trickling into my ears I was flooded with memories, each and every one of them of my Mother's laughter.  Monopoly at midnight on New Year's Eve.  Girl Scout Camp.  Makeshift living-room plays about Bible characters (did the Bible mention matzoh ball soup??).  Seriously, my mother once laughed so hard at us that she crashed the car into a tree (low speed, no injuries).

I'm already 30 years older than EVERYBODY in this class.  The last thing I need is to have the lights come up while I'm trying not to simultaneously laugh and cry for no obvious reason.

It's amazing how much emotion you can begin to process in three minutes, and how much time you can compress into that space.  This is, by the way, entirely against the point of shavasana as I understand it.  But the soul needs what it needs, right?

My Christmas cactus is blooming.  Right or wrong, I believe my Grandmother makes flowers bloom for me when times are tough.  It started blooming on my Dad's birthday, and I'm thinking it may still be blooming on Mom's.   Hugs come from heaven to us from all different directions, be it a flower, or a blanket from a stranger.

DeeDee


Thursday, December 1, 2016

People Look East....

One of my favorite Advent hymns is People Look East, although it was new to me just a few years ago.  Written in 1928, it has a more ancient sound to it, and it has an awesome alto part (always a plus in my book LOL).  

But the appeal is very deeply rooted in the things that are most important to my heart:  Being prepared, being hospitable, making life as lovely as you can with what you have been given with what strength that you possess. The hymn calls us to prepare, to endure, to grow, to shine.  It calls us to be excited, VERY excited!

Guest, Rose, Bird, Star, Lord - they are ON THE WAY!  Get cracking, people! It IS the crowning of the year.

DeeDee

Wednesday, November 9, 2016

Insurance Coverage....

When I was a kid I didn't think about insurance coverage.  My dad worked for Ford, a decent factory job.  His union negotiated things like a 40 hour work week, paid sick and vacation time, health care coverage and retirement.  Until he died last summer he was still on Ford's health care plan, and he'd been retired for over 20 years.  So when I was hospitalized with kidney disease as a child and needed what was essentially experimental treatment to avoid major surgery, we were covered.  And as a result, I still have healthy kidneys.

When I was 18, my coverage under my dad's plan ended.  I paid a nominal fee for campus insurance for the next three years, and then got a job with excellent health and dental benefits (my teeth still have many of the fillings paid for by that insurance - I'd likely be close to toothless without it).  During medical school I was covered at the school clinic, but not for dental (I lost a tooth during that time). Since then, I've been lucky enough to be employed in jobs that provided reasonably affordable group health insurance.

I am very lucky.  I never had any substantial gaps in coverage, and never had any significant illnesses when I did.

Let's move down a generation.

Before Affordable Healthcare, kids could be covered under their parent's insurance if they were full-time students up to (I think) age 26.  That was fine, but as everyone knows, college costs have skyrocketed, so for lower middle class kids (or anyone!) there are gaps where they take a year off to work for money for the next year.  This is what happened to my nephew.  At the ripe old age of about 20 he was diagnosed with high blood pressure (it's a family thing. It sucks, but it is what it is, you know?).  During a gap year, he was working at Walmart for just under full time. He had no coverage, and didn't have the $75 to pay for a doctor visit he needed to keep his prescription going.  That's 10 hours of work at minimum wage, right? BEFORE taxes. So he ran out of his $4 medication.  And then his pressure when up.  And then he suddenly lost the vision in part of one eye, ended up in the ER ($500) with a CT scan ($300), with follow up with an ophthomologist ($200) and so on and so on and so on.  (At minimum wage this is over 130 hours of labor, more than a month's work at a less-than-full-time no-benefits job.) This is medical care for the poor without health care.  It is endlessly costly, and they can't pay it, and the hospitals and doctors end up eating the costs and charging everybody else more to make up for it.

One of the benefits of the Affordable Healthcare Act is that kids can stay on their parents' insurance to age 26 whether or not they are attending school.  Another is that pre-existing conditions and gender cannot be held against you. For Ana, this is EVERYTHING.  As it stands now, she can stay on my insurance until she is 26, and by then I was hoping that the Affordable Healthcare Act would offer some truly affordable options.

As it was before, her insurance would have ended when she finished school.  We are barely able to manage high school, and she is enrolled on line at this point.  She is not going to graduate at 18, so we have a little more time than my head usually screams, but by 20 at the latest she'll be done.  And then....

If Affordable Healthcare is repealed in its entirety, she will have no healthcare coverage.

She is a kidney transplant patient.

Her transplant medications alone run over $7000/month.  Add in her headache medications.  Add in quarterly doctor visits ($600).  Add in quarterly Botox injections ($1500).  Add in quarterly labs ($1000 - $10000 depending on what they need).  She hasn't been hospitalized this year, but we just finished paying off what we owed from 2015.

Here's the bottom line:  We can sell our home and try to find a cheap two bedroom appartment (and if we do it will be in PA where the insurance coverage is better!) and we can cash in our retirement.  The sum total of that plus my salary would keep her going for about two years.  Maybe a bit longer. We would, of course, use some of that money to purchase a health care plan for her, but there would be a pre-existing condition clause that would exclude ALL of what is wrong with her for the first year or two, so we'd essentially be paying a lot of money for nothing for a while because that is how it used to work.

If we're lucky, we'd bridge the gap somehow and survive retirement on Social Security and part time work.  If not....the transplanted kidney would fail.  She has already said she will refuse further dialysis, so....she will die.

I am incredibly grateful for insurance coverage.  I am more than a little afraid, this morning, that we won't always have it.

DeeDee

Thursday, November 3, 2016

Physical Strength....

Gratitude for our bodies is something we frown upon in this country.  It's odd. We are the most narcissistic people on Earth: Snapping selfies, wishing for thigh gaps, fishing for complements on today's outfit.  But we are not supposed to appreciate ourselves, ourselves.

In 2004 I went on my first mission trip with the church.  I was morbidly obese and horridly out of shape, but young enough to get by on grit and stubborn stupidity.  At one point on a rainy afternoon (they were ALL rainy that year if I recall correctly) I stepped up about 18 inches onto the porch we were building.  Because I wasn't strong enough to lift myself up with my arms, my mud-caked boot slipped along the porch and the other shin slammed right into the front edge, with all, oh, let's be honest, 260+ pounds of me right on top of it.

I won the 'Biggest Bruise' contest that year.  I'm sure I cracked the surface of my tibia (you can still feel the callous on the front of the bone!), and bones just bleed and bleed....

It was a sentinal moment for me.

I'd already developed hypertension and was on medication.  But denial is a funny thing.  Sometimes it takes a good, solid CRACK to open your eyes.  If my body was the Temple of the Holy Spirit, well, I'm surprised she was willing to hang out there at all.  But Grace is like that.  God isn't waiting for our bodies to be better temples.  He's waiting for us to ask for help to become what he wants us to be.


I started getting in better shape.


This morning before work (I start at noon on Thursdays so don't get TOO impressed) I got up at five, walked three miles with the dogs, prepped a small bedroom for painting (cleaned out the closet, washed down the walls and woodwork following Hubby's patch-and-spackle repairs), and painted.  Up and down the ladder, trimmed around all the bookshelves, up and down two flights of stairs, and .... done. Well, there's still the woodwork, but that is Satan's own part of painting, don't you think?


If I hadn't slipped...would I be in good enough shape to do this?


DeeDee

Wednesday, November 2, 2016

Maturity....

November is gratitude month, and I already missed the first day.  Such is life, I suppose.

I've set a personal record on Blog Silence, and there is a reason:  Babygirl is growing up.  Not too long after my last post we were discussing some random thing, and she made a comment about whether or not I was going to blog about it.

Don't get me wrong. It's not as if I didn't know she knew about the blog.  But the blog's been here for over five years and it was the first time I could recall hearing her mention it.  And there was something in the WAY she mentioned it that made me wonder:  Does she mind?

You have to understand there there are hundreds of intimate details of our lives that never make it into the blog.  I DO have a filter of sorts.  But there are details that perhaps, now, need a better filter.  A more mature eye.  A gentler hand.

Today I am grateful for maturity.  I am grateful that Babygirl and I have survived five and a half years of chronic kidney disease together, and that she has had the chance to grow into a young adult in my home. But she is a different person than I am, quieter and more private.  More SnapChat and less Facebook, if you will.

So, the first 699 posts were Kid.  This is post #700. We have the kidney.  Maybe time for things to shift.

DeeDee

Thursday, September 8, 2016

The New School Year.....

Babygirl is 17.

How did this happen?  She was 11 when she was diagnosed, 12 when she got her transplant.  In retrospect, it feels like an eternity of driving, waiting, praying, suffering, rejoicing, walking on pins and needles.  In my heart it feels like only moments ago that I comforted that tiny raging toddler after her weeping foster mom left her in our hotel room in Guatemala.

I wish it could be easier, for her sake.  But for me?  I could ask for a simpler life, but I couldn't ask for a better child.  She is kind, she is funny, she is responsible.  Despite all she goes through she finds reasons to laugh and crack wise.

(Funny Mission Trip Story:  We were REALLY out in the boonies, no Dairy Queen in sight.  But there was a local convenience shop that sold gas, snacks, milk, beer.  It also had ice cream, milk shakes and 'blizzards.'  At the end of a long, hot day we stopped there with our van for the first time.  As we unloaded the team, one of the kids looked at the signage in the window of this tiny place and said, "They sell Vape supplies here?!?"  Without missing a beat, Babygirl replied, "That's how you know it's QUALITY ice cream.")

School started two days sooner for her than for her peers locally.  We opted, this year, to enroll her in an online school.  (This is one more situation where I could wish we lived over the Pennsylvania border:  PA has free online schooling available for any in-state student who needs it.  NY does NOT.  PA also has insurance that covers catastrophic illnesses in kids regardless of parental income. NY does not.)  But for a fairly reasonable fee, we have her in a NYS accredited high school online.  Because her former headache doctor felt she should attend school whether she had a headache or not, she did not get a single 10th grade credit, so we are starting that grade over.  The advantage of online schooling is, however, that she can go as fast or slow as she needs to.  She can 'attend' class as easily at 2 PM as at 1 AM. So if she is up to it, and remains motivated, she can gradually catch up some credit.  Her hope is to graduate on time with a Regents diploma, which we would not be able to acheive with ordinary homeschooling.  She's working on getting into a rhythm with the programing.

On top of this she has agreed to take care of her nephew, Squeaker, when he gets off the bus after school each day so that her sister doesn't have to pay for daycare.  She is truly amazing.  I am truly blessed.

DeeDee




Friday, September 2, 2016

Doctors Are Lifesaving Idiots.....

Picking up where we left off.....

Dental infection.  Antibiotics. Twice. Severe gut infection caused by dental antibiotics.  Winning the gut battle with NEW antibiotics.

Except.....not.

I was given metronidazole for the C. diff, one of only two available treatments.  It must be taken every eight hours for 10 days.  By the fourth day the diarrhea had resolved, but the medication itself was making me so sick I could barely eat.

I left a message for my doctor:  "I have so much nausea from the medication that I've lost another two pounds.  I can't take anti-nausea meds because they make me to sleepy to work. I have a yeast infection, and my tongue is BURNING."

Summer makes communication difficult.  My doc was out of the office, as was the nurse practitioner who initially saw me.  I have all of my medical records in my married name, and although the entire front desk knows "who I REALLY am" (AKA a partner physician in disguise) when I call, the nurse and doctor who managed my message apparently did NOT.

Here is how the call back went:

Nurse:  "The doctor wants you to know that you have a very serious infection and you must finish your antibiotic.  He says that if you would take it with food you would have less nausea.  He also wants to know where you think you have a yeast infection?  And he wants me to tell you that this antibiotic does not cause yeast infections.  It does, however, cause a metallic taste sometimes, and that is probably what you are feeling on your tongue."

It is a testament to my overall patience that I let this run its course.  Because, really?  I am a FIFTY-EIGHT year old woman, and odds are good I have had at least ONE yeast infection in my life and know EXACTLY where it is and what it feels like.  PLEASE do not assume that my IQ is under 80 before you have even spoken to me.  ASK if I am taking it with food, don't assume that I am doing it wrong.  And hey, here's an idea - check the previous provider's note:  Even if you wrong-headedly believe that THIS antibiotic cannot POSSIBLY be the cause of all this trouble, could it be the fact that it is the THIRD DAMNED ONE in less than a month????  I mean, I didn't get this very serious infection outta nowhere, did I?

Ugh.

Me:  "First, let me introduce myself.  My chart is in my married name but I am Dr. D.  I am altogether aware of how serious this is. This is my SIXTH day of this antibiotic, not my first.  I am not being a baby about the side effects, I AM taking it with what little food I can get down and I am trying to WORK and not vomit on anyone.  Tell him the yeast infection is in my VAGINA, and tell him this is my THIRD antibiotic in less than two months, which he would know if he had read the last provider's note.  And this is no damned 'metallic taste.'  My tongue is on fire.  Have him call me if he has any questions."

He called in a fourth antibiotic and some yeast medication.

I've been in practice for nearly 30 years and I don't think I have ever asked a grown womant to explain to me where she 'thought her yeast infection was located.'

I can't tell this story without every nurse in the room laughing their butt off.

Anyway.

I started the new medication, which is FOUR times daily.  The nausea and burning subsided, and I actually managed to have a couple of good work days, and felt pretty well for our beach vacation.  I completed a total of 14 days of treatment between the two medications and came home and went back to work.

Monday was fine.

Tuesday was...uncomfortable.  Tuesday night was an up-and-down to the bathroom festival, and by Wednesday it was clear that I had not succeeded in clearing the problem.   Thursday I went to my own doc (OhThankGod).  In less than two days I was MUCH sicker than I had been the previous time.  This time my blood work confirmed dehydration.  I was sick enough that I couldn't even read. For me, that's SICK.

Cultures were repeated and were again positive for C. diff and he took me out of work for a week and restarted a second course of antibiotic #4.  It was about four days before I could really clean up the work I'd left undone.  And this time, instead of taking the medication four times a day whenever I remembered (I did get in four a day, but they weren't too evenly spaced), this time I have an alarm set for every 6 hours on my phone.  I wake up twice at night to take them. It took the full week to feel like I was anything close to normal.

I'm cleared to return to work on Tuesday, although I'll still be on the antibiotics at that point.  Pray God I don't have a third recurrence.

DeeDee

Saturday, August 6, 2016

Antibiotic Gut......

About six weeks ago I got a toothache.  It wasn't bad, initially - nothing a little Tylenol wouldn't kick - and since the tooth in question was up under a permanent bridge I just said a prayer and waited. But it felt suspiciously similar to the pain I've felt when I was working up to needing a root canal, and since I didn't have a thousand bucks sitting around waiting for a dental emergency I hoped for the best. Of course, it was a Sunday when it went from Tylenol-will-do-it to holy-crap-gimme-narcotics level pain.  I could feel some swelling, so I grabbed some amoxicillin (leftover from Maybelle's Lyme disease - yes, I took DOG antibiotics - don't judge me!) and called the dentist first thing Monday morning.  

An x-ray showed what I already knew - there was an infection.  But the worse news was that this tooth has already HAD a root canal, so in addition to it being permanently glued to a large bridge, it's already sealed shut.  So whaddaya do about that??

Well, you take antibiotics.  Amoxicillin is fine, but increase the dose and hang in for a couple of weeks.

Okey dokey.

I finished, as instructed.  And three days later the entire right side of my face blew up.  

This would not have been so bad, aside from the pain, except we were loading up for our annual mission trip the following evening. So I called the dentist again and explained that not only was I worse, but I couldn't come in to see him.  (Always what your provider wants to hear, I assure you.)

 "Well, how about we put you on some amoxicillin?"  How about not, since it worked so well last time?

"Clindamycin, then."  Alrighty.

I started it Thursday evening, and by the Friday night load-up I was at least 50% better, and off we went on Saturday to fix houses in West Virginia, an hour and a half from the nearest decent hospital (directions are always posted at the center, and every group has a copy): 

.

By Tuesday evening it was apparent to me that I was suffering from one of the rare side effects of this class of antibiotics:  A Mallory/Weiss tear of the esophagus.  there was no bleeding, but the pain when I swallowed was spectacular, and the heartburn was unbelievable.  I was inches away from vomitting but terrified to do so:  With a partial esophageal tear that is the VERY last thing you want to do.

And on Wednesday, the cramping started.  Nothing terrible, thank God, and our worksite had a functional bathroom.  But on Thursday, our center lost all of its water, so there were no showers on site, and very limited toilet flushing for our final two days.  You cannot imagine:  One hundred people, half of them teenagers....and I HAVE to go to the bathroom. At a dead run.  In the middle of the night. Three times.

I came back, returned to work, finished the antibiotic. The great news is that the tooth is 100% better.  The okay news is that my esophagus healed up by the time we got home.  The not good news is that the rest of my gut just kept getting worse.  I couldn't eat much, and I couldn't stray far from a bathroom.  The dogs got very short walks. I dropped three pounds. Then five. Then eight.

By Wednesday of this week I hit the "I want my mommy" point, and called my doc.  Thursday I saw the NP, who ran some tests.  The good news?  No dehdration and my sugar is awesome.  The bad (but hardly unexpected) news?  I have C. diff. 

Basically, we all have Clostridium difficile living peacefully in our guts.  Most antibiotics do NOT kill it, but they wipe out everything else that usually keeps this bug in control.  Once that balance is upset, the C. diff overgrows and produces a toxin.  It's the toxin that is the issue, causing cramping and diarrhea.  In fragile patients, this can lead to severe dehydration, perforation of the gut and even death.  

I'm not so fragile.  But there were moments yesterday when death made a certain degree of sense.  

So now I'm on yet ANOTHER antibiotic to make my gut settle down.  So far, I can't say whether we're winning the war or not, but I did manage to leave the house for a little while today.  I'm not allowed to return to work until the symptoms resolve.  

I try not to be too cavalier about the possibility of side effects of medications.  I know they happen - I've had plenty myself.  It's easy for doctors to forget or play down the suffering caused when this sort of thing happens.  But honestly, the alternatives were limited as well.  Dental abscesses are no joke:  I had a young patient have a stroke as a result of one that encroached into the carotid artery, and not too long ago the news had an article about a 12 year old who died from a dental infection.  

But I sincerely apologise to ANY patient who feels I didn't sympathise properly when they reported a side effect.  

DeeDee

Sunday, July 31, 2016

New Use for a FitBit....

Babygirl's most recent visits to the doctors were generally productive and reassuring.  Driving in the Philadelphia area during the Democratic National Convention, less so.  All of the trucks seemed....confused.

Nephrology had nothing new to say.  They scolded her for missing doses of medication (how does that even happen? I wake her up EVERY DAY and she has phone alarms.  It's the morning pills this time, two sets still in the boxes when she sorted.  UGH).  The kidney is doing well despite this, with a creatinine of 1.05, about average for her lately.  The headache medication still have her a bit too acidic but they decided that taking 14 bicarbinate tablets a day was about the limit.  Fourteen.  It's a lot of sodium, seriously.  So, lab work here in six weeks, and see you in three months in Philly.

Gyn had nothing new to add.  We were overdue by a couple of months there.  Dr Z of course took Babygirl aside alone to question her ("Why do they always ask me if I feel safe??" she asked me later.  "Be glad that question puzzles you," I replied.  "Oh.").

Neurology talked Babygirl into the full 31-injection set of Botox.  Watching this provider do the injections, compared to the CHOP provider, it seemed that she was more organized about her approach, or perhaps it was that she just talked more about the logic of the shot locations as she worked.  The really interesting thing was that I didn't need to order the Botox from our specialty pharmacy and have it shipped to Nemours/Dupont hospital ahead of time (copayment:  $300 each time CHOP had us do this!).  These folks just pulled the vials out of their fridge and gave it to her.  It will be part of the bill for that day, so it will be interesting to see how that plays out.  I did call our insurance company ahead of time to check on this, and they weren't sure WHY CHOP had us send the medication in like thay - they would have paid for it as part of the service.  Dr P, our new neurologist, tells me that they get the Botox for about $100/vial.  Since they use 2 vials for Babygirl's injections, the total cost MAX would be $200, so what the heck, CHOP? Could I have my extra $200 back?? Just one more reason that I'm glad we aren't going there anymore.

One of the big problems for people with migraine is sleep. Babygirl routinely reports poor sleep, so Dr P asked me to put my FitBit on Babygirl at night to see how much sleep she is getting, which is a creative approach to data collection. I've also made Babygirl commit to turning off all electronics at 11 PM whether she is having a hard time sleeping or not.

We are to update neurology in 2 weeks with a headache report and sleep data.  And then we'll see.

DeeDee

Saturday, July 30, 2016

Sure-Fire Paint Remover....

Some years ago when I decided to paint the fireplace bricks, I painted the cheap-looking ceramic tile hearth as well. (Painting With Brownie Mix) The tiles are bland beige squares, and the former owner must have gotten a deal on them because he used them all over the house on both sides, on walls, floors, counters - places where floor tile has no business being.  We've gotten rid of all of them, except these.

The ultimate goal is to install a gas fireplace insert, and when we do, we'll upgrade the sad little hearth to something pretty.  Poured colored concrete, perhaps, or quartz, or Italian tile, or ANYTHING but these sad, boring beige babies.

Painting them brown helped a little, but paint doesn't really stick too well to tile unless you rough it up a little first, so over the years it has chipped away.  I've convinced myself that it's charming.  It's either self-delusion or go find the rest of that can of paint and touch up, and THAT always sounds like work.

Enter.....Larry.

You can see the "charming" tile next to him on the floor, under his Sudoku book.  He's chill that way.

We've had him since mid-May, and he's been a perfect gentleman.  Or he WAS, until the Great Backyard Apocalypse engendered by our neighbors' July 4th celebration began.  Apparently setting off fireworks less than 30 feet from his head was more than he was prepared to take. And thus began Poopmaggedon.  It took us nearly two weeks of leash-walking the poor boy into the backyard every day to convince him no one was going to kill him.  And in the meantime, his guts were in a total, uncontrollable uproar.  His location of choice to let go?  The tile.

It could have been worse.  He didn't select the Chinese rug, and he (mostly) avoided the hardwood. And the tile is not in a path that anyone has to cross in the dark. But let me tell you:  Dogshit is fabulous paint remover. Every successive cleanup peeled larger and larger circles of paint off of those tiles, leaving the left side completely, well, unpainted.

If it weren't for the smell, there'd have to be a patent here someplace.  The supply appears unlimited, it's cheap to produce and probably not hard to package and ship if anybody needs some.  I'd be happy to help out.

DeeDee

PS Some crating, probiotics and regular walks have him set right.

Tuesday, July 12, 2016

Turning It Upside Down....

Once you have lost 80 pounds, you have a little....mmmm....slack.  Since I have about 20 more to lose to get anywhere close to a healthy weight, I have to live with this for the time being.  Dressing around this requires careful shopping and fitting, and if you all want to say you never noticed, well, then, I'm shopping pretty well, thanks.

But I'm enjoying this yoga thing, so I'm making a comittment in appropriate clothing.  I had pants, but they were purchased about 30 pounds ago.  Loose t-shirts do okay for cover up, but when you go into Downward Facing Dog, you get Upward Facing T-Shirt.  Not only can't you breathe, but everyone else gets a flashy show.  And the slack stuff?

Okay. Feel free to stop reading if you are faint of heart.  Or take a shot of whiskey or something.

It's bad enough that when I am moving quickly up a hill there are inexplicable squamous smackdown noises when my 'apron' meets my upper legs.  Turn that upside down and there's an almighty adipose avalance toward my ribcage.  To make things worse, I finally learned how to relax all my facial muscles when I'm upside down.  I'm thinking that perhaps Maybelle the hound-dog has been reincarnated in the result:  I can feel my jowls displace my cheeks, but that's okay because I think my cheeks have shoved my eyelids up to my hairline.  (Side note:  If I were truly intended to put my arse above my wrists, a merciful Father would not have let it get so big.)

Thank God for Old Navy.  They actually believe that Plus Size women exercise, and they make stuff that keeps your skin from sliding all over the damned place while you do it (well, except my face.  No fixing that in this life, I suppose), and shirts that stay DOWN without making you look like you are wrapped in an inner tube.  I wouldn't wear it to Walmart (although I've met people who would), but I'm okay for class.

So far this has had no measurable effect on headaches for either Babygirl or I, but I feel like my posture has improved, and I can tell my balance and upper body strength are better.  It's an easy place to meditate. And it seems nice to be in a 'sport' where the only competition is internal, and everyone cheers everyone on.

DeeDee

Sunday, July 3, 2016

The Downside of Fit....

Adding three 75-minute classes/week to a full schedule sucks some time out of your life, you know?  Not that the yoga hasn't had some very nice benefits.  Babygirl and I get to spend time together. We are getting in better shape.  We have some new life skills:  Breathe.  Be in your body.  Let your shoulders relax down your  back.

I no longer fall sideways everytime I stand on my left leg.  Babygirl is beginning shape up a nice plank.  Neither one of us has any real good news to report yet on headache improvement, but it's less than a month, so....

In other news:  Larry.  My sister-in-law (an animal savant if ever there was one) said, after one brief glimpse of Larry, "He's at least 10" despite the rescue's estimate that he was about 6.  Our vet saw him the other day, and she agrees with my SIL - he's probably about 10 years old.  Ah, well, we don't care, he's cute, and walking him has made him younger every day. Yesterday's walk had him leading ME the whole way.  He's so different from Maybelle. She selected a different route every day, and crossed the street as often as I would let her.  Larry is more predictable:  Go west until I won't go west anymore, then go north until I turn him toward home. Unless it's hot, then south to the river.  We've heard him bark only twice, once when another male dog tried to check out his sexuality and he let out a houndy, "Notgay!" and once in the middle of the night, when he bayed at SOMETHING outside the front window for long enough to wake us all up.

So life is pleasantly boring, but singularly lacking in free time.

Besides, it's summer. I have books to read, and grandkids to hang out with.

DeeDee

Sunday, June 12, 2016

Perceptions......

Yesterday I went to a yoga class for the very first time.  Well, not counting some kind of yoga sort of thing that I went to once at our church where we lay down on the floor for an hour doing a progressive relaxation exercise in the dark for an hour (seriously - we never moved at all - it was a weird experience).  

To help you understand my experience a little, you need some background.

I grew up Baptist.  Now, I can't speak for all churches of this denomination, but I can tell you that I was taught that Satan had his hand in an awful lot of stuff.  Almost anything that came from anywhere outside of our home town was pretty suspicious, and a heck of a lot of what DID come from our home town was for sure hell-bound as well.  So the Catholics were doomed (they had statues in their churches, idols, doncha know! AND beer tents and BINGO!), and Mormons and Jehovah Witnesses for sure. The Methodists might make it even though they baptized BABIES for crying out loud, and the other Protestants might be okay.  I'd never even heard of a Muslim or a Buddist, honestly, but I knew that Hypnosis and Accupuncture and Iridology and Reflexology and most other non-traditional-medical-ologies were certainly dabbling in the Devil, and Yoga was certainly right up there as a doorway straight to Hades.  Namaste, y'all.

Clearly I had some things to work through in my medical training, as well as in my spiritual journey.

But Babygirl's new doctors have literally prescribed yoga three times weekly for her headaches.  So here we are, pushing through yet another rediculous cultural barrier leftover from childhood.  

"Namaste" literally means "I bow" but implies "I bow to the divine in you" as a recognition of the spark of the divine dwelling in all people.  Taken from the narrowest view of my childhood I suppose it could be interpreted as "I worship the divine in you" which would, of course, put this greeting right up there in the 'idol worship' (go straight to Hell, do not pass Go) category.  Taken as my heart has come to understand Christ's call to us all, I would interpret it as, "I recognize that you, as I, are equally created in the image of God, and I honor that image."  

We are called to love others as ourselves.  We are all made in the image of God.  The fact that I was taught to distrust my own theology if it came in a foreign language doesn't change my theology. Namaste.

The class was an hour and a quarter.  I was, somehow, not expecting it to feel like exercise.  This, it turns out, was a serious error in judgement.  My legs are pretty good from all the walking.  My abs? Not so much.  I rehabilitated my right leg after a foot fracture a few years ago so my balance there isn't TOO bad, but the left?  Let's not talk about it.

Before the poses requiring us to stand on one leg, the instructor kindly told the class that we were all welcome to move to the wall if we needed support for balance.  It wasn't until today that it dawned on me that she was actually only talking to ME, the new, grey-haired lady with zero yoga experience.  

We both had some perceptions to work through.  I didn't fall over because of my grey hair, and lightning didn't strike me for growing up Baptist and attending yoga anyway.  I think we'll all be okay.

DeeDee

Wednesday, June 8, 2016

Going to Medical School.....

Dear Class of 2020:

I'd like to introduce you to one of your new teachers.

Jerry was born there in Buffalo in 1934.  He moved to the snow belt with his family, graduated high school and married my mom at 19. He worked his whole life at the Ford Stamping Plant, had three kids, and died of Parkinson's Disease and COPD last summer at the age of 80.  An ordinary life, but....

When we were kids, he and my mom packed us up in an old station wagon and went camping all the way accross the U.S. TWICE.  We saw mountainous sand dunes in Indiana, glaciers in Montana, boiling mud in Wyoming, and trees so huge they beggar imagination in California.  We stood on four states at one time.  We stood in a massive cavern in New Mexico when they turned out the lights and let us see what it was like to be truly blind.  We went white-water rafting in impossibly challenging waters.

He built a two-story cabin in the woods, by himself with his own two hands. He taught me to handle a gun, same as my brothers. He hiked two generations of Boy Scouts up Mount Marcy.  He had bright blue Paul Newman eyes. He was an extraordinary man.

When I was 20 I became my family's first college graduate, with an associates degree.  A year later, a Bachelor's.  After three years of cancer research at Roswell Park I called my Dad to have my weekly 'tea-by-phone' conversation with him.  "I'm thinking about going to medical school, Dad."  It was a low-key conversation, discussing pros and cons, expenses and logic and career paths without pressure or judgement.  He was kind and supportive. "Either way, honey."  Ten minutes after we finished talking, his sister from California called in a state of total excitement and exclaimed, "I hear you're going to be a DOCTOR!!"  He was THAT proud.

When I graduated from NYCOM in 1987, he was there.  The day before the ceremony we went to campus to look around, and he specifically wanted to see the anatomy lab.  It was a brand-new building, barely finished in time for us to use it.  I told him about our first day; how we were all nervous and trying to not show it.  About the moment of silence honoring the people before us who had volunteered to be there to be our teachers, and the somewhat useless reminder for us to be respectful and reverent.  We then met our cadaver.

There were four of us on the team, and it took all our strength to raise her to table height.  She was short, she was round, and she was HEFTY.  We named her Addy, because she was very Adipose. I told my dad about that first disection: To get to the chest wall, one must remove the breasts.  Some of the construction workers who had just finished the building had asked to observe, so when our forceps proved less than adequate for the amount of tissue involved and we lost our grip (slapping a large, wet breast back down onto the exposed chest wall with a room-stilling THWACK!), one of them offered us a pair of pliers from his tool belt.  That was the end of any solemnity we had left in us.  We laughed hysterically, completely DONE with nerves, finished the dissection like pros and ordered Chinese from the lab with the scent of formadehyde still strong on our hands.

My father found this story hilarious.  My mom found it nauseating.  Dad asked to see a cadaver.  Mom fled.

As we examined a fully-dissected body, Dad and I talked at length about how the cadavers had taught us much that we would never have learned in mere books.  And despite the appearance of disrespect, when I spoke of how emotionally challenging it was for me to perform Addy's facial dissection, he understood that there was, and remains, a deeper connection to humanity both because of and despite what many would see as a very dehumanizing process.

I suppose I wasn't too surprised, then, when I discovered that Dad had sent himself to medical school upon his death. His lack of education never reflected low intelligence but rather lack of opportunity, and he took his opportunities where he could find them.

And here is my message to you:  I want you to know that Jerry knows you are going to laugh at the things you find as you dissect him, and both of us are okay with that. His pacemaker IS on the wrong side (he's a left-handed redneck - putting it on the correct side would have interfered with his shootin' arm). Lord knows, he has a million scars and they each have a story (the chain-saw wound on his thigh, the toe amputation due a run-in with the lawn mower, the extra belly-button-like mark from a power drill?  Feel free to make up a story.  I guarantee the real tale is funnier).  But I love that battle-scarred old guy, and I miss him, and I want you to remember he is there because even after a life well lived, he still had it in him to want to teach YOU.

Respect that.

DeeDee



Friday, June 3, 2016

A Day at the Beach.....

Sometimes you just have to call it a day after a million doctors' visits.  We are 90 minutes from the Jersey shore here, and despite a less-than-stellar shore weather report, we decided that today was a good day to play hooky, and instead of coming straight home, we loaded up a cousin and went to the beach.


The temperature was 68 degrees, and the sun, nowhere to be seen.  


It didn't stop people from being out and about, and it didn't stop the beach from being the beach.


We managed to keep my flip-flops from floating off to Florida. The sweatshirt did eventually come off and swimming did finally happen. 


And we ate good food!

(And, to be honest, some bad food - one cannot be on a boardwalk for six hours without eating a few fried goodies LOL.)

We had our hair styled bye the salt wind. (Mine never quite comes out this well.)


And we found peace.

DeeDee

PS

Thursday, June 2, 2016

Wilmington Adventures....

Today's appointments were with our newest doctors at Numours DuPont Pediatric Hospital in Wilmington, Delaware.  Now, before you all get your knickers in a twist, this hospital is just 20 miles past CHOP, so it's not such a stretch for us to get there.

We came down late last night to our home-away-from-home, and left at about 10:30 AM for a 1 PM appointment.  Good idea, actually, since despite the distance being only about 40 miles, we arrived at 11:45.

The new neurologist did a couple of new things:  She shifted Babygirls's current migraine prevention medication from once daily short acting to a 24-hour formulation at a higher dose, and she put her foot down and insisted that Babygirl become religious about her fluid intake, and begin yoga three times weekly.

The pain management specialist did an evaluation, including the now-familiar depression and anxiety screening.  Then we spent nearly two hours with a pain management occupational therapy specialist, who assessed Babygirl's general coping strategies, posture, and overall levels of satifaction/frustration with her life/pain.

Then we drove 'home' through rush hour traffic through Wilmington and Philadelphia.

It was, in total, exhausting.

The only simple thing was the parking.  And lunch. Lunch was easy.

We aren't sure what the next step will be.  For sure we will be going back in August for another round of Botox. The neurologist feels there is benefit in continuing even in the face of failure thus far. She feels that relieving the ongoing secondary muscle stress that must necessarily be occuring as a result of Babygirl's daily pain is still of some benefit even if there is no obvious relief of the headaches.  The team will determine if we need to come down for weekly/biweekly sessions for pain management training or whether that could be done somewhere closer or not. Once we have some information about follow up we will schedule Nephrology at CHOP.

DeeDee

Tuesday, May 31, 2016

He DOES Have a Pulse.....

When my baby brother first met Larry, he asked, "Does that dog even HAVE a pulse??"

Yeah, he's pretty laid back.  And the first couple of weeks, he moved like an old man, stiff of hip and slow of step.  He just generally didn't have a f..., well, any energy, to give.

He was stressed.  He was mourning.  He'd lost everything, twice over:  His name, his surroundings, and most of all, his person.

I'm pretty sure it was just one person, and I think it was probably an old guy.  Larry perks up every time a slow-moving old guy with a cane and a baseball cap comes by, and moves a bit faster to check him out if possible.  With Maybelle we were able to keep her name.  With Larry, we only knew that the rescue had been calling him HotDog for a couple of weeks, and they didn't know his original name.

Camping this weekend loosened him up.  He knows how to work a zipper (but you have to watch - he likes to take the slider off - we have a couple of sweatshirts that don't zip anymore) so he could get into the tent anytime.  And even though he could have left the tent without assistance, he woke me up for permission when he needed to go out in the night.

The fenced dog park let him do what he likes:  Monitor the perimeter.  And once that was done, he RAN.  It was amazing to see a dog that only a few days earlier required dragging to move, run.

This mornings' walk got even more interesting.  Larry got a squirrel by the tail.  Yes, Dave, yes, he did. There were a few factors in this.

1) City squirrels are oblivious little gits.  They apparently assume they are pretty safe.
2) Larry has some pretty impressive sneak skills for a big dog.  He drops low, the tags stop jingling, and he moves in careful.
3) When he shifts from stalk to strike he SHIFTS FAST.
4) Squirrels, when in a panic, underestimate the size of their squirrely butts in relation to the openings of chain link fences.  It was a nearly fatal slowdown.

In the end, the squirrel's tail was missing a good bit of fur, and Larry was wearing his finest Stoner Smirk.

He's becoming quite the family man. If you don't go to him, he'll come to you.  Yes, the boy has a pulse.


DeeDee

Sunday, May 29, 2016

The Smell of Childhood....

From the time Citygirl was three I've been taking her camping.  The first time was laughable.  I learned quite a few things on that overnight in the woods:

1) I had been camping all of my life but I had never been 'The Grownup' on the trip before.
2) 'The Grownup' has to pack more than a tent and sleeping bags.
3) Waking up in a camp with no coffee is horrid.
4) Other campers, although total strangers, are sympathetic to this fact and will give you coffee (AND Tylenol) if you look pathetic enough.
5) You need to find other people who are better at adulting than you are to go camping with.

Fortunately for us, we soon after met our neighbors across the street. Their three young boys and their orange tent ("The Rainmaker") were veteran campers, willing to let us tag along while I figured out 'The Growup' thing.  THEIR friends had two boys, and a girl nearly Citygirl's age, and a huge canvas tent they lovingly referred to as the Taj Majal.  (The first time I met them, they were assembling this tent in the dark.  Their then-11-year-old boy was assisting as dad instructed:  "Move the pole left.  Left!  NO, MY left!  You'll NEVER be a f***ing engineer!"  I debated the wisdom of staying.  I'm glad I did - that line is etched in camping lore and laughter forevermore.)  We all camped together at least once a year for a long, long time, returning each Memorial Day Weekend to a local campground, adding family and friends as time went on.

Then.

Kidney failure. Transplant.  Constant concern about germ exposure.  Our campground flooded and the team worried that leftover contamination from the flooding would make it an unsafe place for Babygirl for a year or so.  Citygirl's graduation weekend took us out of town one year, and....I don't really know what all else happened.

So this year, for the first Memorial Weekend since 2010, we went camping at 'our' campground.'  Many of our campground friends have grown up or moved away.  But some still come, and for Babygirl this is campground "home."

"Remember that time we had that race where people had to put their heads down on a bat and spin around and then ran?  And people ran right into parked trucks?"  "Remember those people over in the corner who always had that HUGE fire?"  "Are we going to build the big slip-and-slide on the hill?"  For a child who often cannot remember being anything but sick, such memories are sharply sweet.

Home. Return to a simpler, worry-free time.  S'mores around a campfire, teaching a new generation Grampa's song about the bear, and spending time on the thyme-scented hill where Citygirl and I used to lie with Bobbe and Tory, watching the stars until we felt sure it was the earth moving under us, and not the stars moving over us.


DeeDee


Monday, May 23, 2016

Wait....Where's Maybelle....?

Getting a new dog right before you lose your beloved old dog was regarded by many who know us to have been a somewhat insane idea.  We kmew, of course, that Maybell was dying.  We had no idea, obviously, that it would happen only a week after we arrived home with Larry.  But the advantages of that choice have been very clear in the past five days.

Starting with Simon:  The old man did not do well when his brother died.  He spent weeks looking for him, and clearly mourned his loss.  I can't say that Simon and Maybelle were as close as Simon and Garfunkel were (they were littermates, after all), but having another dog here has made the loss of Maybelle less traumatic for him.

Then there's us:  Larry is acclimating, and increasingly showing us his goofy side.  He's begun to play, and if he still isn't the world's best walker, he at least appreciates the opportunity to get out of the house.  The fact that he so clearly likes us, and is so happy to be here helps ease the pain of the loss.  And when I needed to cry the other day, he sympathetically let me sob all over him and didn't protest.  He's like Maybelle in that way.  Maybe it's a hound thing.

Finally, there's the neighborhood:  Everybody who sees Larry is excited.  "What a sweet/beautiful/awesome dog!"  "Yeah, he's pretty laid back.  We suspect he was a serious stoner in a previous life."  "Hahahahaha! Yeah, I can see that! Probably went to Woodstock. Hey, wait....Where's Maybelle.....?"  It makes telling people about her loss less painful when there is a gigantic goofy distraction at the end of the leasth.

Once again, I have to say:  If you are looking for a dog, consider an adult rescue.  Larry came from a high-kill shelter, and we are lucky to have him.
Larry, snuggling with Hubby's ALF toy.
In the SMALL dog bed, naturally.

DeeDee

Friday, May 20, 2016

Linking Sense to Sound and Sight....

Synesthesia: (noun)
1. a sensation produced in one modality when a stimulus is applied to another modality, as when the hearing of a certain sound induces the visualization of a certain color.
2. or, the feeling that you are losing your mind.

I suffer from synesthesia.  I can sometimes hear smells. I smell smoke when there is nothing there.  Blinking lights go 'tick-tock' in the front of my head.  Sounds can split into dozens of separate pieces that refuse to rejoin.  Soda bubbles dance on the roof of my mouth when there is nothing in it.  I can see green when everybody else is seeing orange.

Thankfully this weirdness is not a full-time occupation.  Migraine auras generally last only about 20 minutes, although I was stuck in smoke-land for about 48 continuous hours last week, which is incredibly distracting. 

Perception is an amazing thing.  I remember doing a study on taste and inheritance in college.  We were given paper strips impregnated with a chemical that only certain people can taste.  The ability to taste (or lack thereof) was inherited, and we were to test our families and see what sort of patterns emerged.  The 'taste' gene was apparently recessive, and no one in my family could taste this stuff, but I swear to you that it was FOUL.  Turns out that there are dozens of such things.  I tested a couple dozen, and among my classmates I was the only one unfortunate enough to be able to taste them ALL.  I remember that one was BHA, a common food preservative.  No one else could taste it.  (Perhaps I passed all this on to Citygirl, and that is why she can tell what country any given wine is from without seeing the label?)  The entire experiment made me understand why some people can eat liver (shudder) and other people think all meat smells like dog poo.

I wonder.  I've wondered since I was a small child if things would look the same if I could look out through someone else's eyeballs. There is no way to know for sure if the blue I see is the same as the blue you see, at all.  

What if autism is just a more-or-less permanent state of synesthesia?  What if one day pine trees smell like pine and the next they smell like a loud train coming straight at you and you can't predict which it's going to be?   I have a glimmer of how horrifying that might be to try to sort through.

What an incredible blessing it is when sound and sight are linked correctly to sense.

Be grateful if that's true for you.

DeeDee


Wednesday, May 18, 2016

1,000 Miles....

We've had Maybelle just over a year.  Not counting the few days I've been in Philadelphia, and a couple of days before Citygirl's wedding, I've walked her every day.  More often than not, we walk twice a day.  Our typical walk on a weekday morning is about two miles, and weekends can be four or more. Evenings are another one to two miles.

Taken altogether, we've walked over a thousand miles.

Rain, snow, bitter cold, sunshine: We've done it all.  We're on a first-name basis with all the neighborhood dogs:  Jeter and Coach, Ruby, Gracie, Sadie and Maya, Sugar, Chester, Penelope, Lucy, Jackson and Oppie and Cooper.  Poodles and Pitties, Rottweilers, Goldens and doodles and little white fluffballs and stiff little terriers, all buddies or enemies depending on whether Simon is tagging along or not.

We are down to our last miles, now.  Last night the inevitalbe happened:  Maybelle couldn't drink.  She keeps trying, and trying, and trying.  And I keep replacing bowl after bowl after bowl of blood-tinged water where the level never really goes down.  Tonight's walk was brief.  She got tired halfway up the hill and had to stop and rest, although you could see she really couldn't figure out WHY.  She led me the rest of the way around the block, stopping to try to climb onto any porch with people on it to say 'hey' one last time.

We will walk one more time before breakfast tomorrow, like always, down to the river so she can sniff the 'coon and beaver tracks. And at 11:30 we'll go see Dr Kathy one last time.

DeeDee

Sunday, May 15, 2016

Being Mothered.....

As I was walking this morning, I was thinking about my Mom.  It's funny to say that I don't miss her, and it isn't QUITE true, exactly.  I finally concluded that I don't miss who she was in the last four years.

So I tried to think back:  When was the last time she was truly my mother?  When, in the sense that SHE mothered ME, and not the other way around?

The memory came to me hard. It was the summer of 2011.  We were on vacation, and Mom was with us, actually adding to our stress because her mobility and mental state had begun to decline - but she insisted on being in the center of everything.  That horrible summer when Babygirl had just been diagnosed with kidney failure and we were out of time and options. (The Beach.....).  That relentlessly horrible vacation with the daily phone calls that just kept adding and adding and adding to the stress until I finally couldn't take it anymore.

Mom was there for me while I cried, and I REALLY cried.  I cried forever, out in public, on the boardwalk for the love of ALL that's holy.  I must have looked like the worst kind of wreck, and she never once suggested that I was over-reacting or needed to 'just calm down.'  She just stayed with me and held on until the storm passed.  I can still feel it - her unconditional love and support.

It wasn't long after that that she became incapable of those things.  Not that she didn't love us - she always did - but she couldn't remember that we had any kind of problems going on that might be bigger than whatever was drifting through her mind at the moment.  If I could go back to anything, I'd want to go back to when she was fully present, for that was one of her great gifts, and something she was always far better at than me:  To live fully in the moment.

 This.  I miss this.

A few years later, a stranger....

And in the end, this....

DeeDee

Adjustments....

My brother and sister-in-law came over to meet Larry yesterday.  He was sleeping in the back hall, a spot he chose to avoid the chaos of three small, loud, running toddlers (who, by the way, neither bothered nor impressed him).  My brother looked him over, admired him, and then asked, "Does this dog even HAVE a pulse?"

Larry's pretty laid back.

The first few days with a new pet are always an interesting learning curve.

Larry does not understand stairs.  Like, seriously, not even a little.  On our way home we had to hoik his 80 pound self up and into the the truck each and every time we stopped, and when we finally got home, he looked at us and pretty much said, "No, thanks, I'm good, I'll just sleep here" rather than try to get out one more time.  Every morning when we let him outside he trips over his leash, skids off the end of the deck and flies out into the yard.  It's the fastest we see him move.

Larry is afraid of moving cars.  Since we live in a city and walk on city streets, this is a little challenging.  The first morning he froze or dove into the bushes every time a car went by, and Holy Hannah help us when it was a garbage truck (and remember, now, I have three dogs with me!).  He has decided, after just three days, however, that these vehicles are apparently not intent on killing him, so he now just stops to look and make sure.

Larry is afraid of beach towels.  We got rained on yesterday, and were totally drenched.  I dried off Simon, then Maybelle, and then went for Larry.  That is when I learned that Larry can, indeed, run.  Somewhere in his past someone must have tossed something over his head to restrain him somehow, so if I want to wipe him down I have to start on one side at the back and work forward with a small towel and don't, for heaven's sake, let the thing flap.

Maybelle, who is never snarky, has been snarking at Larry (a growl, a bark, no teeth).  He can't figure out how to get on a couch anyway but he was afraid to be in the same room with her for a bit.  They are working it out.

This is everybody this morning (Maybelle is against my leg, and Larry is in Simon's little bed LOL):



All chillin' with mom. Time for a walk.

DeeDee

Saturday, May 14, 2016

Keeping Promises......

One of the issues that we've had with neurology has been difficulty with follow up and follow through.  It took from September to November to get an initial appointment set up, and there are usually weeks to months between appointments.  A new medication will appear to be helping, and then stop, and we call to update them and then...wait.  And wait.  And then some small adjustment is made, and we are told to keep our already-scheduled (or not-yet-scheduled!) appointment.

When we leave an appointment, we cannot EVER schedule the next one.  We have to call the scheduler, and more than half of the time the schedule 'isn't open' for appointments yet in three months, or six weeks, or whatever.  They can't match appointments up with the transplant team because those days are seizure days, not headache days.  And so on and so on.  Add to that the fact that I just feel like they aren't really paying attention?  It's been tough.

The problem is that I know from experience that there are no local pediatric neurologists.  The nearest to us is more than an hour away an he isn't taking new patients.  The clinic at University Hospital is full.  Rochester has a headache clinic for adults.  So we hung on.

So starting over with someone new was a little scary (Fresh Start).  We left Tuesday's appointment without a follow up appointment and the promise that the provider who saw us would be setting up appointments with a headache specialist, a pain management specialist and the pain management program.

I put a reminder in my phone to call in two weeks to check on the status of the appointments.  It's what I do. I figure if they haven't called in two weeks, something 'got forgot' as it were.  It's what I tell my patients to do.

While we were meeting Larry on Thursday, my phone kept pinging with new email messages.  I ignored them - after all, odds were good it was a sale at Wayfair.com or something from Freecycle.

When I checked, though, there were three emails confirming appointments with providers I'd never heard of at the new medical system, all on the same day and location, all back-to-back in the afternoon of June 2nd.  I haven't had the chance to check, but I'm guessing that it's neurology, pain management and pain management team - all set up within 48 hours of when we left our appointment, and all for less than a month from our original appointment.

These appointments are at Nemours DuPont Pediatrics in Wilmington, Delaware.  It's 200.3 miles according to Mapquest, as opposed to 184.1 for CHOP.  We have no need to see nephrology at that time, so we don't need to go the CHOP, but so far they haven't sent any records (gee. what a stunning surprise.) so I might call and see if I can at least get her MRI's on disc to take to the appointment.

It's actually scary to feel.....hope.

DeeDee



Thursday, May 12, 2016

And My Other Brother Darryl....

As you all know, we are losing Maybelle (Another Loss Coming....).  She is doing remarkably well, considering.  We've discovered that elevating her food and water bowls to just above chest height allows her to swallow, so we've halted the weight loss.  We don't let her eat any crunchy food, so the bleeding has decreased.  But in medicine we have a saying:  "All bleeding stops eventually."  If the cancer itself doesn't make it impossible for her to breathe or swallow, she'll get too weak from the blood loss to function.  Either way, we lose.  But for now, she appears energetic (if somewhat slower than a few months ago) and happy, so we are riding it out.

But.

One of the things I love best about my hubby is that he loves 100%.  (I'm not a fan of saying "110%" or some higher number - it's horse pucky. 100% is the total, the max, all in, no holds barred full on cannonball love).  So when Maybelle dies, it's going to be 100% grief.  (This, by the way, is true for both of us, but by nature and by training I have a certain ability to be able to both feel it and, I don't know, observe it?)

Part of my reason for getting Maybelle in the first place is because Simon is an old little man.  I expected her to outlast him, and having a 'back up' dog in place in advance of his sad demise seemed prudent, since I was reasonably certain that Hubby, like his Dad before him, would not want to look for a new dog after the death of his beloved old man.

I mean, who could?  Look at this thing:


But Maybelle hit me hard in the heart.  I haven't loved a dog like this, maybe, never.  Maybe even including Lady, my dachshund from my childhood.  And why not?  This face:


So, applying my own logic too my own sad heart, I've been, once again, cheating on my dogs and looking at doggie porn online.  There are SO many homeless dogs!  I decided that I wanted a hound. Something about Maybelle just twists me, so I thought maybe having a similar face would help.  I applied at a couple of local hound rescue places for a couple of sweet looking dogs (neither TOO similar to Maybelle in looks, but adorable nonetheless).  After weeks of no replies at all, I spotted a Redbone Coonhound that looked so much like her that I clicked on her image and sent an email for Maggie.  I got a response within hours, asking for me to fill out their application, which I did.  They accepted our application within a few more hours, and then asked, "How do you plan to get her?"

Umm, oops!  Lynchburg, Virginia, you say?  

Well.

Babygirl had her new doctor's appointment scheduled for Tuesday, and it was on the border of Delaware and PA.  I looked at the map, and it was already more than 1/3 of the way to Lynchburg.  So.....we went.  Curlygirl kept Simon, we took the truck, Maybelle and Babygirl and headed south.  We arrived yesterday and met Miss Maggie, and discovered a couple of things.  

Maybelle cannot possible be a purebred Redbone.  She was nearly half again as big as Maggie.  There probably is some bloodhound hiding in there.  And we discovered that, as beautiful as Maggie is, and as much like Maybelle as she looks, she didn't touch our hearts at all.  Not one of us felt that pull.  

But sleeping quietly in a kennel nearby....



...was this handsome man.  His name is Larry.  He's four.  He was billed as being "good on a leash" (and if by "good on a leash" you mean "willing to stand perfectly still and not move unless you drag him" he's AWESOME on a leash LOL) and he is housebroken.  All three of us simply decided that no matter what pretty face we thought we were chasing, this was the one we had truly come for.  

So in 48 hours we went through 6 states and the District of Columbia, up and over the Blue Ridge and got us a dog.  

And SHAME on the local rescue groups who STILL have not contacted us.  Given how low the fees are in VA to adopt ($75 compared to $250 here) we broke even with travel, gas, overnight camping and a meal at Buffalo Wild Wings.

DeeDee

Tuesday, May 10, 2016

Fresh Start....

Babygirl and I met with her new neurologist today.

I walked in and handed her three lists:
1) The medications she is currently taking.
2) The medications she has tried in the past.
3) "The List" we developed of every of all of the medications that have ever been used by ANYONE for migraine that she is allowed to try given the limitations of her transplant medications and kidney function (it is three pages long, single spaced, with comments on almost every medication outlining any potential concerns and what to do about them).

She took a thorough history.  She listened carefully and asked questions when she wasn't sure she'd heard correctly.  She made Babygirl herself talk about the headaches and how it's been.  And then she told us a few things:
1) She isn't the best headache specialist in her group, but she will make sure that is who we see next time, at which point it would be logical to decide whether to proceed with more Botox or not.
2) There are medications that are not on any of the above three lists, and we are going to try two of them once we clear them through the kidney team (she will let US do that since that seems more efficient to her. Imagine her trusting us to actually check it ourselves....).  We are to start low and adjust weekly and call EVERY TWO WEEKS with a progress report (what, not every three months??)!
3) Their group has a pain management team and she thinks Babygirl should go.  They don't do medications. They don't do counseling.  They do biofeedback and other mind/body connection training, and it's a short but reportedly effective program.

This doctor will coordinate with the provider she wants us to see and the pain management people to try to minimize the number of trips we have to make, since the new doctor is actually located in Wilmington, Delaware.

Hell, what's a few more miles?

DeeDee

Friday, May 6, 2016

Snapped....

Babygirl had her second set of Botox injections on Monday.  The first set resulted in a slight decrease in morning headaches for a few days and then she went back to her baseline.  According to the studies, about 15% of people who have no response to the first set will respond to the second set, so, I paid the $300 co-pay and set up the appointment (knowing, in advance this time, that it will be $1000 out-of-pocket for the procedure.  You gotta do what you gotta do).

After the NP finished the injections, she said, "I don't think you need to come all the way down here in six weeks to tell us how it went.  Just give me a call, and if it isn't working we can talk to nephrology about what the next step should be."

SNAP.

I said nothing.  Not one word - because ANY word I spoke would have gotten social work or security called on me.  I nodded, accepted the discharge papers and left with Babygirl and drove home.  I had plenty on my mind, of course:  Maybelle was acting sick (good actress, it turns out LOL), I'll need to catch up on work, I'm a little sleepy to be driving so far...

Underneath it all was a dark, simmering rage.

These jokers have been working on Babygirl's headaches for over THREE YEARS.  More than two years ago I made one of them develop a list of EVERY SINGLE possible medication they might EVER consider using for her headaches.  I made them do it because I was sick and tired of the "we have to ask nephrology" back-and-forth that took, on average, three weeks for every medication change and dose adjustment.  She's been on the same useless regimen without an increase or adjustment for over EIGHT MONTHS because the HEADACHE doctor is worried about her KIDNEY.

The list is in her chart. It has been vetted by the kidney specialists and the pharmacy team. It outlines what medications can be used, what precautions must be taken if they ARE used, what to watch for, what blood work to order.  ALL THEY NEED TO DO IS CHECK. THE. (add whatever inappropriate descriptor YOU prefer here) LIST.

Tuesday I called our local adult headache specialist and outlined my problem.  He gave me the name of two headache clinics, one in Chicago (OMG!) and one in (you guessed it) Philly.

I called Jefferson University Hospital.  The headache clinic WILL NOT see anyone under 18.  They refer me to a pediatric neurologist (interestingly enough, not the headache clinic at CHOP).  I called, expecting that it would be a few months to get in.

We are going Tuesday.

Getting records to them by then is the big challenge.  Nephrology is willing to send MRI reports and medication lists but not neurology notes.  I'm not all that excited to talk to neurology to ask for those notes, you know?

I sincerely hope it's not a wild goose chase.  At the very least, I hope it opens the door to some new possibilities.

DeeDee

Tuesday, May 3, 2016

Good Reports All Around....

Babygirl and I left for Philly Sunday afternoon, arriving in time to have dinner with my older brother in a lovely Chinese restaurant.  We laughed over memories of the first time we had ever had Chinese food:  It was a five-star restaurant owned by Danny Kaye in San Francisco. They made my 6'6" brother borrow one of their suit jackets to meet their dress code (picture monkey arms sticking our of short sleeves LOL).  We were with my Aunt Squirrely's family, so we were a party of eleven, seated at one enormous round table with a big lazy Susan in the middle.  The food was amazing, but what was more amazing to me was what we each remembered specifically about the experience.  My brother remembers wishing our parents were a bit more sophisticated, like our Aunt and Uncle.  I remember them being tense with the wait staff about the quality of the rice wine.  I preferred unsophisticated, apparently.

Our visits to the doctors were fine.  Since we had our labs done locally, there were no surprises. We already knew the kidney was doing fine.  There is an odd side effect from one of her headache medications that make her blood too acidic so we need to take more medication to try to help that (up from 5 pills twice a day to 7 of an over-the-counter thing that I literally by by the thousand).  Babygirl tolerated the Botox injections without too much difficulty.

Between appointments we had four hours free, so we walked half a mile to the Indian food kiosk and got lunch, got on the subway, overshot out stop and walked half a mile through downtown Philly to the historic district and took the free walking tour of the US Mint.  It is way cool to watch thousands of fresh pennies running down a conveyor belt!  My phone says we walked 5 1/2 miles.  Babygirl's says we walked 6.  Things that make you go hmmmmm.

But....while we were gone, Maybelle took a turn for the worse.  Hubby sent me a text saying she wouldn't eat or drink, and he couldn't get her up to go outside.  He was really upset, and so was I.  Was I going to make it home in time? Was it time to call and make that last visit with the vet?

So after our last appointment we got in the car and came straight home, cruise control on 72 mph, no breaks.  As soon as I came in the door, Maybelle got up off of her 'deathbed' and came to me, tail wagging, with a big doggy smile.  She immediately asked for a walk, and when we got back she at an entire bowl of food and was prancing around like a puppy.  Hubby, while clearly relieved and happy, kept looking at her and saying, "You little S***.  You scared me to death and made me cry and you were just being a BRAT!"  It was completely hilarious in a totally heartrending way:  She knows she is sick and doesn't want me to go away right now.  Don't worry baby, it's three months before I have to go back to Philly.  By then you'll be over the Rainbow Bridge and all better.

DeeDee